https://www.apbdrf.org/blog-3 daily 0.75 2021-05-27 https://www.apbdrf.org/what-is-apbd-1 daily 0.75 2025-02-17 https://www.apbdrf.org/what-is-apbd-1/what-is-apbd monthly 0.5 2021-05-27 https://www.apbdrf.org/what-is-apbd-1/apbd-signs-and-symptoms monthly 0.5 2021-05-27 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1616524045260-5V9U8HSGRYELGEA97M79/Word-Cloud-APBD-1200x524.jpeg What is APBD - Right menu - APBD Signs and Symptoms - Make it stand out We recently asked our community to share in their own words how they describe APBD. This Word Cloud is a visual representation of their words. https://www.apbdrf.org/what-is-apbd-1/apbd-signs-and-symptoms-n3gxe monthly 0.5 2023-07-20 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1616524045260-5V9U8HSGRYELGEA97M79/Word-Cloud-APBD-1200x524.jpeg What is APBD - Right menu - APBD Symptom Checker - Make it stand out We recently asked our community to share in their own words how they describe APBD. 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Carol Rosenstock Joins the APBD Research Foundation’s Board of Directors - Make it stand out Carol Rosenstock https://www.apbdrf.org/news-releases/developing-a-disease-concept-model-for-apbd monthly 0.5 2026-03-31 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/96691f1a-3643-43b1-a82f-cf0efa1ebb06/dcm_for_apbd.jpg News Releases - Developing a "Disease Concept Model" for APBD -- a Collaborative Research Initiative - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/ucla-scientists-awarded-pilot-grant-to-discover-new-apbd-biomarkers monthly 0.5 2026-03-26 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/a3087ea7-5835-4710-9f7e-dc04afbb0497/Bitan_Fogel_article.jpg News Releases - APBD Research Foundation 2025 Rally for Research Grant Series: UCLA Scientists Awarded Pilot Grant to Discover New APBD Biomarkers - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/n-lorem-deep-intronic-mutation-receives-fda-approval-for-clinical-trials monthly 0.5 2026-02-24 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/451225a4-3d57-41bc-9ef4-e3a9aa3922f4/n-Lorem+logo+vertical.png News Releases - n-Lorem Foundation ASO for the Deep Intronic Mutation Causing APBD Receives FDA Approval for n-of-1 Clinical Trials - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/were-expanding-our-gsd-iv-biobank monthly 0.5 2026-03-30 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/7dba8053-0372-45ad-8008-191586225cea/APBDRF+BioBank.png News Releases - We’re Expanding Our APBDRF BioBank - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/apbd-research-foundation-mourns-the-passing-of-former-board-member-and-director-emeritus-david-epstein monthly 0.5 2026-01-15 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/e3842dfc-54c6-4317-a4d8-7d98ab1f69eb/David-Epstein-w2.jpg News Releases - APBD Research Foundation Mourns the Passing of Former Board Member and Director Emeritus David Epstein - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/rare-genomes-project-researchers-update-the-global-genetic-prevalence-of-gbe1-related-diseases-to-34000 monthly 0.5 2026-01-15 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/091415f5-1e94-4d80-844a-36be43c7ff2e/GBE1-Related-Diseases-Global-Genetic-Prevalence-updated-July2025-1.png News Releases - Rare Genomes Project Researchers Update the Global Genetic Prevalence of GBE1-related Diseases to 34,000 - Make it stand out Read the Preprint https://www.apbdrf.org/news-releases/matthew-gentry-receives-rare-disease-scholar-award monthly 0.5 2026-02-20 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/fa96eb6c-9f3c-4f73-b996-402f827af123/dr-gentry.jpg News Releases - Matthew Gentry, PhD Receives Oxford-Harrington Rare Disease Centre’s 2025 Rare Disease Scholar Award to Advance Enzyme Therapy for Neurological Glycogen Storage Diseases - Make it stand out Dr. Matthew Gentry https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/2ca324f9-c8a6-43fa-9c0b-902623f275b4/team-gentry.jpg News Releases - Matthew Gentry, PhD Receives Oxford-Harrington Rare Disease Centre’s 2025 Rare Disease Scholar Award to Advance Enzyme Therapy for Neurological Glycogen Storage Diseases - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/foundation-partners-with-combinedbrain-to-launch-gsd-iv-biobank monthly 0.5 2026-03-27 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/9f1b1ec3-2393-48c6-a284-63512f685795/APBDRF+BioBank_ew.png News Releases - Foundation Partners with COMBINEDBrain to Launch APBDRF BioBank - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/why-you-should-get-a-crid monthly 0.5 2025-12-17 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/c9100882-2fad-47c9-aeac-c49fcd58f97d/crid-ew.jpg News Releases - Why You Should Get a CRID - Clinical Research ID? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/foundation-attends-n-lorem-foundations-third-annual-nano-rare-patient-colloquium monthly 0.5 2025-10-28 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/8ecc226a-e95e-4d2a-a14e-56fa731b836e/n-Lorem+colloquium_edit+%281%29.png News Releases - Foundation Attends n-Lorem Foundation’s Third Annual Nano-rare Patient Colloquium - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/foundations-executive-director-represents-the-apbd-community-at-nords-2025-breakthrough-summit monthly 0.5 2025-10-27 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/83f391d8-2675-4dee-8375-52d7b0e766e1/IMG_2438.jpg News Releases - Foundation’s Executive Director Represents the APBD Community at NORD’s&nbsp;2025 Breakthrough Summit&nbsp; - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/living-rare-study monthly 0.5 2025-10-27 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/449983ef-e94c-4b4c-9380-999d603f4612/Living+Rare+Study+%281%29.PNG News Releases - Participate in the Living Rare Study: Share Your Experience, Help Shape the Future - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/carol-rosenstock-shares-her-apbd-journey-with-the-jewish-standard monthly 0.5 2026-03-20 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/e38e8a3b-1a8a-432b-be7c-b3238ff97d45/carol.jpg News Releases - Carol Rosenstock Shares Her APBD Journey with the Jewish Standard - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/foundation-on-the-road-combinedbrains-2025 monthly 0.5 2025-11-12 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/33a762a9-a347-456a-b6f9-cce4438ca40d/fotr-banner.jpg News Releases - Foundation on the Road: Lindsay Gill, PhD, Foundation’s Research Manager, Attends&nbsp; COMBINEDBrain’s 2025 Clinical Readiness Day and Annual Summit - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/91e9fb3a-9629-4b92-ac75-bc0c09a3ca2e/summit-25-pic.jpg News Releases - Foundation on the Road: Lindsay Gill, PhD, Foundation’s Research Manager, Attends&nbsp; COMBINEDBrain’s 2025 Clinical Readiness Day and Annual Summit - Make it stand out APBDRF Research Manager, Lindsay Gill, Ph.D. (right) and COMBINEDBrain CEO, Terry Jo Bichell, Ph.D. (left). https://www.apbdrf.org/news-releases/apbd-research-foundation-mourns-the-passing-of-co-founder-michael-weiss monthly 0.5 2025-09-23 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/717ce7ab-6823-4ba5-ac15-9c3ce6b206d3/image1.jpg News Releases - The APBD Research Foundation Mourns the Passing of Co-Founder Michael Weiss - Make it stand out From left to right: Michael, Gregory, and Emil Weiss https://www.apbdrf.org/news-releases/record-breaking-success monthly 0.5 2025-08-12 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/8a1d23fa-8ac7-43f1-8ad5-1abb71b698df/APBD-Tour-de-Friends-Rally-for-Research.jpg News Releases - Record-Breaking Success: APBD Tour de Friends Rally for Research Raises $178,000 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/golden-heart-flower-announces-phase-i-trial-in-europe monthly 0.5 2025-08-25 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/c93efe81-433f-4f2f-85a3-49e5a736a039/ghf_logo.png News Releases - Golden Heart Flower Announces Phase I Trial in Europe - Make it stand out Click here to learn about the Phase 1 Trial https://www.apbdrf.org/news-releases/lindsay-gill-ph-d-joins-foundation-as-research-manager monthly 0.5 2025-08-01 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/cb66079e-cb57-4f07-93d6-067571c936b6/Lindsay_Gill_APBDRF.jpg News Releases - Lindsay Gill, Ph.D. Joins Foundation as Research Manager - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/amber-robertsons-gsd-iv-narrative-reaches-millions monthly 0.5 2025-10-24 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/7e8034ad-11dd-4852-913e-f7d7e5b4c1d1/amber_narrative.jpg News Releases - Amber Robertson’s GSD IV Narrative Reaches Millions - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/jeff-coopers-story-reaches-millions monthly 0.5 2025-08-01 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/18ee6fcf-942e-49e9-9613-e2f43dcc74b3/Jeffsnarrative.png News Releases - Jeff Cooper’s Story Reaches Millions - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/letter-to-apbd-community monthly 0.5 2025-05-29 https://www.apbdrf.org/news-releases/navigating-a-presymptomatic-diagnosis monthly 0.5 2025-05-29 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/871ab879-4a26-49b1-ad60-68927352e980/Presymptomatic-Diagnosis+%281%29.jpg News Releases - Navigating a Presymptomatic Diagnosis - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/7b93060f-e0b3-4f78-ac6e-544a99e2144b/image3-1200x675.jpg News Releases - Navigating a Presymptomatic Diagnosis - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/treating-the-rarest-of-the-rare-a-conversation-with-dr-amy-williford-of-n-lorem-foundation monthly 0.5 2025-05-29 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/02c6d6c1-4c3b-4bf1-bf50-e3b6286edd6e/Dr-Amy-Williford.jpg News Releases - Treating the Rarest of the Rare: A Conversation with Dr. Amy Williford of n-Lorem Foundation - Make it stand out Dr. Amy Williford https://www.apbdrf.org/news-releases/accelerating-research-and-drug-development-through-our-partnership-with-combinedbrain monthly 0.5 2025-05-29 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/ac57780f-782e-4d89-8024-cfc6e97d860f/apbd_COMBINEDBrain+%281%29.jpg News Releases - Accelerating Research and Drug Development Through Our Partnership with COMBINEDBrain - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/key-takeaways-from-our-collaboration-with-costello-medical monthly 0.5 2025-05-30 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/b0febf34-db19-4d68-acd6-d8dd3ce480b4/image1.jpg News Releases - Key Takeaways from our Collaboration with Costello Medical - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/paving-the-path-to-treatment-highlights-from-the-apbd-biomarkers-workshop monthly 0.5 2025-05-30 https://www.apbdrf.org/news-releases/raising-funds-to-advance-apbd-research-has-never-been-more-important monthly 0.5 2025-08-01 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/36e0dbc8-eb28-4319-b431-d5af801acb86/RallyforResearch-image1+%281%29.png News Releases - Raising Funds to Advance APBD Research Has Never Been More Important - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1748641220131-0YK23WRDQ0CCFS56PQY7/RallyforResearch-image4+%281%29.png News Releases - Raising Funds to Advance APBD Research Has Never Been More Important https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1748641220096-G5MDZA0IZINFAM58XTII/RallyforResearch-image2+%283%29.png News Releases - Raising Funds to Advance APBD Research Has Never Been More Important https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1748641221295-SHFSN3D1YJHLG1ZO427C/RallyforResearch-image3+%281%29.png News Releases - Raising Funds to Advance APBD Research Has Never Been More Important https://www.apbdrf.org/news-releases/dr-larry-arky-joins-the-apbd-research-foundations-board-of-directors monthly 0.5 2025-05-30 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/6f7782da-efe8-4384-bd2a-0ed2271d0515/dr_arky_quote.jpg News Releases - Dr. Larry Arky Joins the APBD Research Foundation’s Board of Directors - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/foundation-partners-with-alex-te-leukodystrophy-charity-to-host-a-special-patient-chat-aimed-at-engaging-the-international-community monthly 0.5 2025-05-30 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/b3b6cd37-ea26-4179-a682-de13c5d8d8b2/Special-Chat-23-1.png News Releases - Foundation Partners with Alex TLC and AGSD-UK to Host a Special Patient Chat Aimed at Engaging the International Community - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/3ea9672d-07f1-4fdf-b295-ad26c6b7d558/sarah+%281%29.jpg News Releases - Foundation Partners with Alex TLC and AGSD-UK to Host a Special Patient Chat Aimed at Engaging the International Community - “Having APBD can be lonely, frustrating, and frightening. Until recently, I knew no one else with APBD, apart from my brother. I am so grateful for the APBD Research Foundation for its work creating a special program to connect patients from around the world.” – Sarah Williams | UK-based APBD Patient and Advocate https://www.apbdrf.org/news-releases/apbd-community-joins-millions-of-rare-advocates-around-the-world-for-rare-disease-day monthly 0.5 2025-05-29 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1741356487598-ZT1C09P97CCZS33J4M4H/Rare+Disease+Day+2025_1.jpg News Releases - APBD Community Joins Millions of Rare Advocates Around the World for Rare Disease Day https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1741356486746-D7037JVS29OZCW0KRVFT/1_1.jpg News Releases - APBD Community Joins Millions of Rare Advocates Around the World for Rare Disease Day https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1741356486091-GU5MKNCQWME7KD6MT1OB/3_1.jpg News Releases - APBD Community Joins Millions of Rare Advocates Around the World for Rare Disease Day https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1741356485398-N8WTPEQ62YNK77J21L7U/4_1.jpg News Releases - APBD Community Joins Millions of Rare Advocates Around the World for Rare Disease Day https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1741356483908-CPBTN0Y8BB6GYLHQCUDG/6_1.jpg News Releases - APBD Community Joins Millions of Rare Advocates Around the World for Rare Disease Day https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1741356484685-NR0P19KZL3F19T30T6IQ/5_1.jpg News Releases - APBD Community Joins Millions of Rare Advocates Around the World for Rare Disease Day https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1741356483191-WQFRSN8VEE5CBLJOCVC4/7_1.jpg News Releases - APBD Community Joins Millions of Rare Advocates Around the World for Rare Disease Day https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1741356481429-9ROJB98DRVL4PDI2747P/8_1.jpg News Releases - APBD Community Joins Millions of Rare Advocates Around the World for Rare Disease Day https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1741356481428-N3NFMO2Z3Q0TFG426M9Q/9_1.jpg News Releases - APBD Community Joins Millions of Rare Advocates Around the World for Rare Disease Day https://www.apbdrf.org/news-releases/czis-cycle-1-rare-as-one-impact-report-features-apbdrfs-work monthly 0.5 2025-02-14 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1739543496468-ICZISST3HQRVO07OH7LG/CZI-Impact-Report-Final-Image.jpg News Releases - CZI’s Cycle 1 Rare As One Impact Report Features APBDRF’s Work, Alongside Peers, to Advance Rare Disease Research - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/melanie-robinsons-caregiving-journey-reaches-millions monthly 0.5 2025-02-14 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/57fccba6-4377-44ce-bb45-2f93ef75c35a/MelanieRobinson.jpg News Releases - Melanie Robinson’s Caregiving Journey Reaches Millions https://www.apbdrf.org/news-releases/scientists-awarded-million-dollar-bike-ride-grants-for-apbd-research monthly 0.5 2025-02-14 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/f99e368b-362f-40de-89a3-ece0b01eacb6/grantees-2024.jpg News Releases - University of Texas Southwestern Medical Center and Newcastle University Scientists Awarded Million Dollar Bike Ride Grants for APBD Research - Make it stand out From left to right: Dr. Felix Nitschke, Dr. Mayank Verma, Dr. Nirbhay Yadav, and Dr. Wyatt Yue https://www.apbdrf.org/news-releases/when-a-physician-gets-a-rare-disease-diagnosis monthly 0.5 2025-08-01 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/8867b315-c18c-49ae-b54a-fdb18a129a89/Lawrence-Arky.jpg News Releases - Dr. Larry Arky’s APBD Journey Reaches Millions - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/patient-perspectives-shared-with-the-fda monthly 0.5 2025-02-14 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/73c2489a-6698-4e89-a1a7-29a4877c4d10/becca-reef.png News Releases - Patient Perspectives Shared with the FDA - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/foundation-on-the-road monthly 0.5 2025-02-14 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/33a762a9-a347-456a-b6f9-cce4438ca40d/fotr-banner.jpg News Releases - Foundation on the Road: Advocating for You and Learning from Peers at Key Stakeholder Meetings - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/59035af1-6fb7-4fca-bb78-488efb78ac55/fotr-image5-e1730135534794.jpg News Releases - Foundation on the Road: Advocating for You and Learning from Peers at Key Stakeholder Meetings - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/54cbe01b-0468-43d2-bbf5-d528ec112970/Jeff-Levenson-DDS-Ronete-Levenson-and-Corey-Hacker-an-APBD-volunteer-and-pediatric-nurse.jpeg News Releases - Foundation on the Road: Advocating for You and Learning from Peers at Key Stakeholder Meetings - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/87245d39-a0e3-49e3-8901-a92a016475c4/fotr-image6-e1730135903257.jpg News Releases - Foundation on the Road: Advocating for You and Learning from Peers at Key Stakeholder Meetings - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/c6323791-5ebc-4bc9-8343-6f55543612f2/fotr-image3-e1730136058638.jpg News Releases - Foundation on the Road: Advocating for You and Learning from Peers at Key Stakeholder Meetings - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/e207af13-67c2-40af-a3bc-182c6bbbf538/fotr-image1-e1730136177296-600x452.jpg News Releases - Foundation on the Road: Advocating for You and Learning from Peers at Key Stakeholder Meetings - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/8ee41234-7790-47e6-a476-dac9142edaa6/fotr-image2-600x516.jpg News Releases - Foundation on the Road: Advocating for You and Learning from Peers at Key Stakeholder Meetings - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/696c0a66-e916-456b-b776-b5b8eb4a1b8c/biogen.jpg News Releases - Foundation on the Road: Advocating for You and Learning from Peers at Key Stakeholder Meetings - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/2024-virtual-apbd-scientific-community-conference-is-a-success monthly 0.5 2025-03-07 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/138466c1-3b93-4a7a-bfaa-bcf7f90dab26/apbd_conference_banner.jpg News Releases - 2024 Virtual APBD Scientific &amp; Community Conference is a Success! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1173998c-1409-4be4-81a8-5b3bb1988a57/apbd_conference_speakers.png News Releases - 2024 Virtual APBD Scientific &amp; Community Conference is a Success! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/282b2794-5629-4fee-9954-052e695a4acb/apbd_conference_countries.png News Releases - 2024 Virtual APBD Scientific &amp; Community Conference is a Success! - Make it stand out Over 140 Conference attendees – from Brazil, Canada, France, Israel, the Netherlands, Poland, the UK and the US – joined us. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/4965a228-620b-46a0-99b1-1c63d13a3bdf/APBD-Group-Photo-Day-1.jpg News Releases - 2024 Virtual APBD Scientific &amp; Community Conference is a Success! - Make it stand out Attendees were researchers, health care providers, industry and non-profit representatives, and individuals and family members impacted by APBD and allied diseases. The virtual Conference made apparent that together we are a growing global force! https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/d2b5f768-5526-4601-afaf-2a2105178982/apbd_conference_sponsors.jpg News Releases - 2024 Virtual APBD Scientific &amp; Community Conference is a Success! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/apbdrf-receives-crucial-support-from-costello-medical monthly 0.5 2025-02-14 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/3dacecc4-0929-489d-9ad0-3744972045fa/blank100.png News Releases - APBD Research Foundation Receives Crucial Support from Costello Medical to Build Bridges Between the APBD and GSD IV Communities - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/7aa91b87-ab75-4b9b-8455-f3d5f04bf998/costello.jpg News Releases - APBD Research Foundation Receives Crucial Support from Costello Medical to Build Bridges Between the APBD and GSD IV Communities - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/3dacecc4-0929-489d-9ad0-3744972045fa/blank100.png News Releases - APBD Research Foundation Receives Crucial Support from Costello Medical to Build Bridges Between the APBD and GSD IV Communities - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/meet-becca-reef-our-newest-team-member monthly 0.5 2025-02-14 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/a1a08001-30a6-4769-af7c-5ec03062f5d8/becca-reef-apbd.jpg News Releases - Meet Becca Reef, Our Newest Team Member! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/apbd-research-funding-opportunity-through-upenns-million-dollar-bike-ride-pilot-grant-program monthly 0.5 2025-02-14 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/677e5af9-ceeb-4cb8-a2c4-624d4bd0d8e8/mbdr.png News Releases - APBD Research Funding Opportunity Through UPenn’s Million Dollar Bike Ride Pilot Grant Program - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/foundation-to-host-virtual-apbd-scientific-and-community-conference monthly 0.5 2025-02-17 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/0765377a-6811-4bf9-aafe-c20468f37971/fullsizeoutput_1654.jpeg News Releases - Foundation to Host APBD Scientific and Community Conference - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/a06c071b-de4d-4660-91d4-a71987703802/apbd-conference-sponsors-9-10+%281%29.png News Releases - Foundation to Host APBD Scientific and Community Conference - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/apbd-tour-de-friends-2024 monthly 0.5 2025-08-12 https://www.apbdrf.org/news-releases/apbd-research-foundations-focus-group-brings-apbd-and-gsd-iv-communities-together-for-the-first-time monthly 0.5 2025-02-14 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/2362f292-c9f6-42e5-bd41-04be6fc9a5bf/summary_report.png News Releases - APBD Research Foundation’s Focus Group Brings APBD and GSD IV Communities Together for the First Time - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/apbd-featured-in-new-book-kaleidoscope-rare-disease-stories monthly 0.5 2024-04-03 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/c4fd1aca-91ea-4a90-9fa7-0b61bae7d877/Kerry_Wong-400x400.jpg News Releases - APBD Featured in New Book, Kaleidoscope: Rare Disease Stories - Make it stand out Kerry Wong https://www.apbdrf.org/news-releases/apbd-community-shines-bright-on-rare-disease-day monthly 0.5 2024-04-03 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1709734622372-NCYXOJJ1KD6UTH8B4AX2/rdd24s1.jpg News Releases - APBD Community Shines Bright on Rare Disease Day https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1709734622370-K0GZT9XZNS14OR8Z30IC/rdd24s2.jpg News Releases - APBD Community Shines Bright on Rare Disease Day https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1709734623567-KD5T4PUNFRWMB69VI2MH/rdd24s3.jpg News Releases - APBD Community Shines Bright on Rare Disease Day https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1709734623901-422C6KYUZI6UT7DGFUW7/rdd24s4.jpg News Releases - APBD Community Shines Bright on Rare Disease Day https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1709734624730-UNPO8NUXAKPLQZPL0LEI/rdd24s5.jpg News Releases - APBD Community Shines Bright on Rare Disease Day https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1709734625068-61H14IQ82H0QKM689FLW/rdd24s6.jpg News Releases - APBD Community Shines Bright on Rare Disease Day https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1709734625774-0EC5991UCL1Y2ZA70P1Z/rdd24s7.jpg News Releases - APBD Community Shines Bright on Rare Disease Day https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1709734626297-8V9XXS6GH311RS4YPUTP/rdd24s8.jpg News Releases - APBD Community Shines Bright on Rare Disease Day https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1709734626850-FIJDDSW1YJCE7X5TN6WB/rdd24s9.jpg News Releases - APBD Community Shines Bright on Rare Disease Day https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1709734734850-ZGNP4C9GG4N1QFHK94BR/rdd24s11.jpg News Releases - APBD Community Shines Bright on Rare Disease Day https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1709734734858-QATWRESXGBU5ASCA54VM/rdd24s10.jpg News Releases - APBD Community Shines Bright on Rare Disease Day https://www.apbdrf.org/news-releases/duke-university-hadassah-medical-organization-scientists-awarded-million-dollar-bike-ride-grants monthly 0.5 2024-03-06 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/9f68257b-7ecc-420b-a8b8-ef96760f5cf6/grantees.jpg News Releases - Duke University and Research Fund of the Hadassah Medical Organization Scientists Awarded Million Dollar Bike Ride Grants for APBD Research - Make it stand out From left to right: Dr. Priya Kishnani, Dr. Rebecca Koch, and Dr. Or Kakhlon https://www.apbdrf.org/news-releases/golden-heart-flower-granted-fda-orphan-drug-designation monthly 0.5 2024-02-28 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1706886714346-LCSZZ8OPMSG8N752KTVS/GHFLogo+%281%29.png News Releases - Golden Heart Flower Granted FDA Orphan Drug Designation for GHF-201 for the treatment of Glycogen Storage Diseases Type IV, including APBD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/meet-anesa-kajtazovic-elwxf monthly 0.5 2024-02-28 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/27db8057-40c0-40c2-ae0a-dd81231c3342/SMAB-Collage-1-1.jpg News Releases - APBD Research Foundation Expands its Scientific and Medical Advisory Board with the Addition of Dr. Jennifer Orthmann-Murphy, Dr. Felix Nitschke, Dr. Matthew Gentry, and Dr. Wyatt Yue - "Early in my career, I believed that the path to making a difference was solely through policy. However, my journey through nonprofit work has been a revelation. It has become abundantly clear to me that nonprofits play a monumental role in advocacy, being the first step toward enacting real change. I am eager to channel my skills and passion into collaborative efforts with the APBD community to sustain our momentum and advance further." - Anesa Kajtazovic From left to right: Jennifer Orthmann-Murphy, MD, PhD; Felix Nitschke, PhD; Matthew Gentry, PhD; and Wyatt Yue, PhD https://www.apbdrf.org/news-releases/meet-anesa-kajtazovic monthly 0.5 2024-02-28 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/549f0fc9-7a2e-44fa-b3f2-604522930bad/anesa-kajtazovic.jpg News Releases - Meet Anesa Kajtazovic, the Newest Addition to our Team!</a> - "Early in my career, I believed that the path to making a difference was solely through policy. However, my journey through nonprofit work has been a revelation. It has become abundantly clear to me that nonprofits play a monumental role in advocacy, being the first step toward enacting real change. I am eager to channel my skills and passion into collaborative efforts with the APBD community to sustain our momentum and advance further." - Anesa Kajtazovic Deberah Goldman, PhD, Vice President of the APBD Research Foundation, to provide patients’ perspective for the GSD Value Project https://www.apbdrf.org/news-releases/apbd-research-foundation-to-participate-in-the-glycogen-storage-disease-value-project monthly 0.5 2023-11-10 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/5a88c49e-b145-422b-964e-b2214c2c79b9/DGoldman-profile.jpg News Releases - APBD Research Foundation to Participate in the Glycogen Storage Disease Value Project - Deberah Goldman, PhD, Vice President of the APBD Research Foundation, to provide patients’ perspective for the GSD Value Project Deberah Goldman, PhD, Vice President of the APBD Research Foundation, to provide patients’ perspective for the GSD Value Project https://www.apbdrf.org/news-releases/funding-opportunity monthly 0.5 2023-11-07 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/33d25cbe-2f01-4a84-970d-1b49f9683961/mbdr.png News Releases - APBD Research Funding Opportunity Through UPenn’s Million Dollar Bike Ride Pilot Grant Program - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/michael-canmann-joins-board-of-directors monthly 0.5 2023-10-20 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/3f774cae-48d9-4674-9f3f-1a9a2c1b5d6c/Canmann-quote.jpg News Releases - Michael Canmann Joins the APBD Research Foundation’s Board of Directors - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/foundation-partners-with-probably-genetic-to-address-diagnostic-challenges monthly 0.5 2023-10-20 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/fd0a5ee5-96ba-4b16-9ce9-d406cdd73003/probably-genetic-logo-w2.png News Releases - Foundation Partners with Probably Genetic to Address Diagnostic Challenges - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/apbd-tour-de-friends-2023 monthly 0.5 2023-10-31 https://www.apbdrf.org/news-releases/paul-ashley-joins-the-apbd-research-foundations-board-of-directors monthly 0.5 2023-07-20 https://www.apbdrf.org/news-releases/foundation-approves-and-implements-its-2023-2025-strategic-plan monthly 0.5 2023-07-20 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/5ea7d8ff-9158-4c26-851c-93773a9f1b14/1.png News Releases - Foundation Approves and Implements its 2023-2025 Strategic Plan - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/807be02b-3121-4141-9f54-a1111d7707da/2.png News Releases - Foundation Approves and Implements its 2023-2025 Strategic Plan - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/00e146d2-2594-49e3-8b2d-57fcc9012d15/3.png News Releases - Foundation Approves and Implements its 2023-2025 Strategic Plan - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/f0896e64-b9cd-4072-9f44-f98404aefc6a/5.png News Releases - Foundation Approves and Implements its 2023-2025 Strategic Plan - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/e19734a2-742e-40d8-bc61-8acc198e2da6/6.png News Releases - Foundation Approves and Implements its 2023-2025 Strategic Plan - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/art-glassman-and-beth-katz-join-the-apbd-research-foundations-board-of-directors monthly 0.5 2023-07-20 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/d9cfae2b-7f2f-4a6c-8ef0-522e5bcfb354/Art-photo-quote-1200x397.png News Releases - Art Glassman and Beth Katz Join the APBD Research Foundation’s Board of Directors - Make it stand out From left to right: Matthew Gentry, PhD, Berge Minassian, MD, and Mayank Verma, MD, PhD. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/0bba076e-bf8b-42d3-89df-ec4e11e54702/Beth-photo-quote-1200x398.png News Releases - Art Glassman and Beth Katz Join the APBD Research Foundation’s Board of Directors - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/university-of-florida-and-ut-southwestern-scientists-awarded-grants-for-apbd-research monthly 0.5 2023-07-26 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/6cfd80b4-78f5-4d01-bc4b-0cf5f880be44/MDBRGrantees.jpg News Releases - University of Florida and UT Southwestern Scientists Awarded 2022 Million Dollar Bike Ride Grants for APBD Research - Make it stand out From left to right: Matthew Gentry, PhD, Berge Minassian, MD, and Mayank Verma, MD, PhD. https://www.apbdrf.org/news-releases/apbd-community-recognizes-rare-disease-day monthly 0.5 2023-03-14 https://www.apbdrf.org/news-releases/apbd-research-foundation-appoints-its-first-executive-director monthly 0.5 2023-03-08 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/c63c5236-e364-4299-8fee-49fe41c6f9c0/NatachaPires-quote-1.png News Releases - APBD Research Foundation Appoints its First Executive Director - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/just-published-clinical-practice-guideline-for-apbd-and-gsd-iv-diseases monthly 0.5 2025-09-30 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1678281455964-SPIW4GX0PK5UG6365ZA4/Guideline-page-1-1-1-1.jpg News Releases - JUST PUBLISHED: Clinical Practice Guideline for APBD and GSD IV Diseases - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/bruce-rosky-talks-about-apbd-and-caregiving-on-kevinmd-com monthly 0.5 2023-03-08 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1678281131408-J0YV1EK2GNV3VULJ5AUA/BruceandJennifer.jpg News Releases - Bruce Rosky Talks About APBD and Caregiving on KevinMD.com - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/meet-camille-keene monthly 0.5 2023-03-08 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/ddd6a4e9-c418-475e-91fa-fe954ffea567/CamilleK.jpg News Releases - Meet Camille Keene! Camille with “Bunny” at Meadowbrook Stables in Chevy Chase, Maryland https://www.apbdrf.org/news-releases/an-apbd-research-funding-opportunity-through-upenns-mdbr-program monthly 0.5 2023-03-08 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1661518324376-LOME0Y0KE8FWPURHWCA3/MDBR%2BImage.png News Releases - An APBD Research Funding Opportunity Through UPenn’s MDBR Program - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/apbd-tour-de-friends-team-raises-99000-during-the-2022-million-dollar-bike-ride-at-the-university-of-pennsylvania monthly 0.5 2022-07-13 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633528585821-6QSFTOA5B7YC7IQICSQM/bike-ride-2021.png News Releases - APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657719452805-Q7UA76KTMK84KCAHPDCB/mbdr-2+%281%29.jpg News Releases - APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657719452672-23POSOACYPQPYSSNMISP/mbdr-3+%281%29.jpg News Releases - APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657719453609-U44FF89EA04KK7R7849L/mbdr-4+%281%29.jpg News Releases - APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657719453868-GPPDSFP16UI4DA78QQBQ/mbdr-5+%281%29.jpg News Releases - APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657719454339-ASM368MN0H558VMYAK7Q/mbdr-6+%281%29.jpg News Releases - APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657719454923-L4U0LOV5AMVHLJGCQD2A/mbdr-7+%281%29.jpg News Releases - APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657719455236-8UQOGX36S63ESSIWHHDC/mbdr-8+%281%29.jpg News Releases - APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657719455705-HNWJE43KZH4F5JXXX4MA/mbdr-9+%281%29.jpg News Releases - APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657719456040-GNXAK9P770Q4M0NT586I/mbdr-10+%281%29.jpg News Releases - APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657719456391-3NLPEDACU4PH0WS6F82Y/mbdr-11+%281%29.jpg News Releases - APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657719456791-OUEQ6R718INK6CAJO38P/mbdr-12+%281%29.jpg News Releases - APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657719457152-V19B4XLH358VQUG7I45V/mbdr-13+%281%29.jpg News Releases - APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657719457677-IVR8PCT61KI7PCBFFC2H/mbdr-14+%281%29.jpg News Releases - APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657719457939-V88EPJPRKJ1Q8AY8MLUB/mbdr-15+%281%29.jpg News Releases - APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657719458448-05VUR90MRCFWIDWXEQ2K/mbdr-16+%281%29.jpg News Releases - APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657719459141-AON17RN91ZU61P6XPOH2/mbdr-17+%281%29.jpg News Releases - APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657719459160-RMPDFW0WGOOHN0WQN121/mbdr-18+%281%29.jpg News Releases - APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657719459905-WD6SBBMYBTQORQY3EAPY/mbdr-19+%281%29.jpg News Releases - APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657719460080-LH3ZFTAN32BOH49VQ2ZI/mbdr-20+%281%29.jpg News Releases - APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657719460852-DNSBUR8K4RSAN4CZN331/mbdr-21+%281%29.jpg News Releases - APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania https://www.apbdrf.org/news-releases/jennifer-orthmann-murphy-md-phd-joins-the-foundations-scientific-advisory-board monthly 0.5 2022-07-12 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657629172111-MTLY9MIGQIZ8FL4IHP3Y/JOMLato.jpg News Releases - Jennifer Orthmann-Murphy, MD, PhD Joins the Foundation’s Scientific Advisory Board - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/apbd-research-foundation-mourns-the-passing-of-board-member-robert-zuckerman monthly 0.5 2023-04-24 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1657627983258-L0CZIODNMB9KERK0HRTQ/robertzuckerman.jpeg News Releases - APBD Research Foundation Mourns the Passing of Board Member Robert Zuckerman - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/remembering-robert-zuckerman monthly 0.5 2023-04-24 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/efb336fb-15b6-4975-982a-de6d81e6dbf4/robert-zuckerman.png News Releases - “Remembering Robert Zuckerman“ - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/first-virtual-apbd-scientific-community-conference-is-a-success monthly 0.5 2023-01-30 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1654528004279-X89OJPGJ6NGLCZHV4Q2P/banner.jpeg News Releases - First Virtual APBD Scientific &amp; Community Conference is a Success! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1654528097461-FQ9WVP0Z7PZOT85QM4K6/APBD-Conference-Speaker-Collage_wide.jpeg News Releases - First Virtual APBD Scientific &amp; Community Conference is a Success! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1654528155644-8RSRG9OXF1HEJN75P5KT/Attendees-Graphic-May-20-2022-1.jpeg News Releases - First Virtual APBD Scientific &amp; Community Conference is a Success! - Make it stand out Over 140 Conference attendees – from Brazil, Canada, France, Israel, the Netherlands, Poland, the UK and the US – joined us. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1654528182035-Q9GZLOXKOOXI5YT44UHM/2022-APBD-Conference-Group-Photo-Wide-1.jpeg News Releases - First Virtual APBD Scientific &amp; Community Conference is a Success! - Make it stand out Attendees were researchers, health care providers, industry and non-profit representatives, and individuals and family members impacted by APBD and allied diseases. The virtual Conference made apparent that together we are a growing global force! https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1654528309916-E163L91MPMNPRNDS04D2/Foundation-Partner-Logos-1.jpeg News Releases - First Virtual APBD Scientific &amp; Community Conference is a Success! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/foundation-to-host-virtual-apbd-scientific-and-community-conference-on-may-11-12 monthly 0.5 2022-06-06 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1654527253544-6UQ8ZT6UULMT430GIC1K/APBD_Main_Image_Final.jpeg News Releases - Foundation to Host Virtual APBD Scientific and Community Conference on May 11-12 - Make it stand out Supported by the Rare As One grant from the Chan Zuckerberg Initiative. https://www.apbdrf.org/news-releases/newcastle-university-scientist-awarded-2021-mdbr-grant monthly 0.5 2025-06-02 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1644522651690-LNIB7O5RH8RY8Z4SZUZT/Dr.-Wyatt-Yue-Headshot.jpg News Releases - Newcastle University Scientist Awarded 2021 MDBR Grant to Develop Glycogen Synthase-Inhibiting Therapeutic for Adult Polyglucosan Body Disease https://www.apbdrf.org/news-releases/foundation-receives-czis-rare-as-one-continuing-grant-to-accelerate-patient-led-apbd-and-rare-disease-research monthly 0.5 2022-02-10 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1644522080038-YYVR8JBH3SLZHBBY6KHW/RAO1of7000+%281%29.png News Releases - Foundation Receives Continuing Grant from CZI’s Rare As One Program to Accelerate Patient-Led APBD and Rare Disease Research Dr. Kakhlon shares, “We previously developed an assay to identify small molecules that inhibit polyglucosan body accumulation in APBD patient fibroblasts. We screened over 10,000 small molecules and identified a handful of small molecules that reduce polyglucosan bodies. Compound E is one of these molecules, and additional preliminary research suggests that it has clinical potential for APBD.” https://www.apbdrf.org/news-releases/hadassah-medical-center-scientist-awarded-research-grant-to-advance-a-promising-small-molecule-for-the-treatment-of-adult-polyglucosan-body-disease monthly 0.5 2022-02-10 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1644521462390-4Z03KKZPME9FPDA36DTN/Dr-Kakhlon-400x429.jpeg News Releases - Hadassah Medical Center Scientist Awarded Research Grant to Advance a Promising Small Molecule for the Treatment of Adult Polyglucosan Body Disease Dr. Kakhlon shares, “We previously developed an assay to identify small molecules that inhibit polyglucosan body accumulation in APBD patient fibroblasts. We screened over 10,000 small molecules and identified a handful of small molecules that reduce polyglucosan bodies. Compound E is one of these molecules, and additional preliminary research suggests that it has clinical potential for APBD.” https://www.apbdrf.org/news-releases/apbd-research-foundation-engages-the-fda-in-patient-listening-session monthly 0.5 2025-10-22 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1644520118164-9KFPIJ79FZY2OGS9ZIT1/Listening-Session-Summary-image-800x284.jpeg News Releases - APBD Research Foundation Engages the FDA in Patient Listening Session - Make it stand out Click here to read the Summary… https://www.apbdrf.org/news-releases/apbd-ad-debuts-at-rare-new-englands-annual-conference monthly 0.5 2021-11-09 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1636486138532-WBL707E787MWOCVXD2JF/APBD_Ad.jpg News Releases - APBD Ad Debuts at Rare New England’s Annual Conference - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/developing-healthcare-guidelines-for-apbd-and-related-gsd-iv-diseases-a-collaborative-effort monthly 0.5 2021-10-06 https://www.apbdrf.org/news-releases/call-for-apbd-research-proposals monthly 0.5 2021-10-06 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633526804781-QM0PX48JQEOLV3ENHMX5/ODC-MDBR.jpeg News Releases - Call for APBD Research Proposals — MDBR Funding Opportunity - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/rare-genomes-project monthly 0.5 2021-10-06 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633528420241-5JH0AD0EFAQMKG7RTZT5/RGP-Logo+PNG+%281%29.png News Releases - APBD Research Foundation Selected to Participate in Rare Genomes Project Disease Prevalence Study - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/2021-apbd-tour-de-friends-team-at-the-million-dollar-bike-ride monthly 0.5 2021-10-06 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633528585821-6QSFTOA5B7YC7IQICSQM/bike-ride-2021.png News Releases - 2021 APBD Tour de Friends Team at the Million Dollar Bike Ride - Make it stand out Thank you! https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633528839039-6FEXQX0P7T5V0XPTJ09X/A2+%281%29.png News Releases - 2021 APBD Tour de Friends Team at the Million Dollar Bike Ride - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633528971439-AUX1QTL69GBIMGDLQ12H/A3+%281%29.png News Releases - 2021 APBD Tour de Friends Team at the Million Dollar Bike Ride - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633529017850-MIBD6RH5H48JAPEHJ10A/A4+%281%29.png News Releases - 2021 APBD Tour de Friends Team at the Million Dollar Bike Ride - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/ut-southwestern-scientist-receives-2020-mdbr-grant-to-develop-a-novel-therapeutic-strategy-for-adult-polyglucosan-body-disease monthly 0.5 2025-06-02 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633529437698-X9MRNMIQ16GJJ0TYYVPZ/headshot_FNitschke.jpeg News Releases - UT Southwestern Scientist Receives 2020 MDBR Grant to Develop a Novel Therapeutic Strategy for Adult Polyglucosan Body Disease Dr. Felix Nitschke (pictured) is an assistant professor in the departments of Pediatrics and Biochemistry at UT Southwestern Medical Center. Dr. Nitschke’s winning proposal titled, “Conquer from Within – Treating APBD by Viral Delivery of Cross-Correction-Enabled Amylase” outlines the development of a novel gene-based therapy for APBD. APBD is an ultra-rare, adult-onset form of Glycogen Storage Disease Type IV that presents as a progressive neurological disorder. It is caused by recessive mutations in the glycogen branching enzyme gene (GBE1) that result in the accumulation of poorly branched, insoluble glycogen aggregates called polyglucosan bodies (PBs). As these PBs accumulate in the central and peripheral nervous system, they cause a cascade of reactions resulting in progressive neurodegeneration and reduced life expectancy. https://www.apbdrf.org/news-releases/roots-jewish-genes-and-cuisine monthly 0.5 2021-10-06 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1614103393999-5AW9AFIVKY64K0GS3W7W/roots.jpg News Releases - ROOTS: Jewish Genes and Cuisine - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/meet-our-honoree-dr-jesse-cedarbaum monthly 0.5 2021-10-08 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633530492722-E29B7Y2CBMVLJ5VILBND/Jesse.png News Releases - Meet Our Honoree: Dr. Jesse Cedarbaum Dr. Jesse Cedarbaum is Professor, Adjunct of Neurology and Psychiatry at Yale Medical School and Founder and Head of Coeruleus Clinical Sciences, LLC. Dr. Cedarbaum currently serves on the Foundation’s Pharmaceutical Development Committee, where he is helping to advance research on APBD that will lead to future clinical trials. A neurologist/clinical trialist with a sub-specialty in Movement Disorders, he has spent the majority of his career as an executive in the pharmaceutical industry, leading teams in the areas of neurodegenerative, neuropsychiatric, and retinal disorders at Regeneron, Elan, Cytokinetics, and Bristol-Myers Squibb. Most recently he led a team at Biogen that advanced three new compounds into the clinic for potential treatment of Parkinson’s disease. https://www.apbdrf.org/news-releases/when-a-13-year-old-takes-on-the-fight-for-a-cure monthly 0.5 2023-04-25 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633705820248-44SFRQLOTGGHIPFZCQK4/cover.jpeg News Releases - When a 13-Year-Old Takes on The Fight for a Cure! Elliott and his family after completing their 36-mile bike ride, Double Chai for a Cure. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633705600582-4I3UTTTDR7LB94JPSNXT/20201018_111327.jpeg News Releases - When a 13-Year-Old Takes on The Fight for a Cure! Friends joining in Double Chai for a Cure https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633705599934-84VFW31UKZFYQM533G8S/WL1_5208_thumb.jpeg News Releases - When a 13-Year-Old Takes on The Fight for a Cure! Elliott's family at his Bar Mitzvah https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633705599054-WSLP34ANDSSOGUW15PA2/WL1_5208.jpeg News Releases - When a 13-Year-Old Takes on The Fight for a Cure! Elliott reading from the Torah at his Bar Mitzvah https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633705598653-N4URC9M1MRR1PY8D8RH4/WL1_5311.jpeg News Releases - When a 13-Year-Old Takes on The Fight for a Cure! Elliott celebrating at his Bar Mitzvah https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633705597953-TJCXN2A9SYL8CLSVB136/WL1_5312.jpeg News Releases - When a 13-Year-Old Takes on The Fight for a Cure! Elliott with his grandfather, Michael, his grandmother, Chana, and his brother, Judah. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633705596825-3HO735ZVM0GY42IKJE4E/WL1_5313.jpeg News Releases - When a 13-Year-Old Takes on The Fight for a Cure! Elliott with his grandfather, Michael, his grandmother, Chana, and his brother, Judah. https://www.apbdrf.org/news-releases/foundation-receives-patient-and-family-support-grant-from-the-society-for-the-study-of-inborn-errors-of-metabolism monthly 0.5 2022-02-10 https://www.apbdrf.org/news-releases/research-update monthly 0.5 2022-08-05 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633706707748-X9UT0Y8RWNLTXNHGEV4U/Prevalence-slide-600x480.png News Releases - RESEARCH UPDATE: How Many APBD Patients Are There? New Research Zeroes in on Ashkenazi Jews in the US - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/raising-rare-disease-awareness-and-funds-for-apbd-research-when-the-rules-change monthly 0.5 2025-08-12 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1b4fe90a-f474-4746-86de-fcd7915384b2/2020-MDBR-Small-Photo-Collage-1-1200x960.jpg News Releases - Raising Rare Disease Awareness and Funds for APBD Research When The Rules Change - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/abbbd1b1-0f3a-4636-bc25-926a56528f77/harriet-saxe-300x300.jpg News Releases - Raising Rare Disease Awareness and Funds for APBD Research When The Rules Change - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/news-releases/foundations-biomarker-workshop-spurs-collaboration-and-hope monthly 0.5 2022-07-29 https://www.apbdrf.org/news-releases/what-does-walking-across-the-gw-bridge-have-to-do-with-apbd-research monthly 0.5 2023-04-25 https://www.apbdrf.org/news-releases/exciting-announcement-for-the-apbd-community monthly 0.5 2022-02-10 https://www.apbdrf.org/news-releases/category/News+Releases monthly 0.5 https://www.apbdrf.org/news-releases/tag/APBD+Tour+de+Friends+Rally+for+Research monthly 0.5 https://www.apbdrf.org/articles daily 0.75 2026-03-20 https://www.apbdrf.org/articles/barbara-tamir-journey monthly 0.5 2026-03-20 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/b0580b5a-006b-486a-8290-51f78d3599bd/AMI-Magazine---2026.jpg Testimonials - Barbara Tamir Shares Her Diagnostic Journey with AMI Magazine - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/articles/laurence-story monthly 0.5 2026-03-20 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/196c6ff9-8c55-4ef9-bf65-2f4cdb0b45cb/Marius-with-family-and-football-player+%281%29.jpg Testimonials - From a Shocking Diagnosis to an International Advocate: Laurence Letreguilly Shares Her GSD IV Journey - Make it stand out From left to right: Laurence, rugby player Antoine Dupont, Marius, and Remi https://www.apbdrf.org/articles/carol-rosenstock-journey monthly 0.5 2026-03-20 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/e38e8a3b-1a8a-432b-be7c-b3238ff97d45/carol.jpg Testimonials - Carol Rosenstock Shares Her APBD Journey with the Jewish Standard - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/articles/sharing-my-daughters-gsd-iv-diagnosis-to-help-over-25000-individuals-impacted-globally monthly 0.5 2025-05-30 https://www.apbdrf.org/articles/from-ms-to-apbd-one-patients-diagnostic-journey monthly 0.5 2025-05-30 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/b0789312-dd3a-471d-811e-7b17942675a4/Jeffsnarrative.jpg Testimonials - From MS to APBD: One Patient's Diagnostic Journey - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/articles/when-a-physician-gets-a-rare-disease-diagnosis monthly 0.5 2025-02-14 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1739562305608-NQTTE866IPB3YP33R1QD/Lawrence-Arky.jpg Testimonials - When a Physician Gets a Rare Disease Diagnosis - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/articles/navigating-a-rare-neurodegenerative-disorder-as-mother-and-daughter monthly 0.5 2025-10-23 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/97d0875e-6fd0-498f-9562-fc207421efa6/Melanie-with-Ginny.jpg Testimonials - Navigating a Rare Neurodegenerative Disorder as Mother and Daughter - Make it stand out Melanie with her mom Ginny https://www.apbdrf.org/articles/nevertheless-she-persisted monthly 0.5 2025-02-14 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/a43c6eac-83ff-4ca3-96aa-77462ce3e615/fullsizeoutput_123c.jpeg Testimonials - Nevertheless, She Persisted* - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/articles/a-mothers-perspective-on-apbd-3wfzw monthly 0.5 2023-11-07 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/7251e2fd-41b0-4817-bbd3-d6dcc8d9c728/Robin-Knoll.jpg Testimonials - A Wife’s Perspective on APBD From left to right: Adam (Mark and Robin’s son), Mark, and Robin Knoll at the 2023 Million Dollar Bike Ride https://www.apbdrf.org/articles/a-mothers-perspective-on-apbd monthly 0.5 2023-04-25 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/b1633ac1-bd3a-46a8-9662-97c197aad56e/IMG_1634_T.jpg Testimonials - A Mother’s Perspective on APBD What is there to say about being the mother of not one, but two, adult children with Adult Polyglucosan Body Disease (APBD)? Obviously, it sucks. Two brilliant, kind, loving, giving, thoughtful, generous, and funny human beings who were misdiagnosed for years. Two people who face diminishing quality of a shortened life. https://www.apbdrf.org/articles/bruce-rosky monthly 0.5 2023-10-20 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/ea152eb9-1dba-4259-8235-8d7338e0ca5d/bruce-rosky.jpg Testimonials - A couple’s journey with a rare neurodegenerative disorder - Make it stand out Bruce and Jennifer https://www.apbdrf.org/articles/a-patient-story-alan monthly 0.5 2023-04-25 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/d87041d6-7a29-4b80-b339-d52f0c51e1c7/Patient-story-Alan-at-Wax%2BWine.png Testimonials - A Patient Story: Alan - Make it stand out Alan at Wax + Wine https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/0535d17e-1a4c-40fa-aad3-dfc58e477368/patient-story-alan-family.png Testimonials - A Patient Story: Alan - Make it stand out Alan with his wife, Marla, and their grandson, Ledger https://www.apbdrf.org/articles/a-patients-story-jeff monthly 0.5 2023-04-25 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/7413c87d-e7b1-405d-83c6-7109a60d0013/jeff-in-garden+%281%29.jpg Testimonials - A Patient’s Story: Jeff - Make it stand out Jeff in his neighborhood garden https://www.apbdrf.org/articles/a-daughters-reflections-on-apbd monthly 0.5 2023-04-25 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633703663310-X93T28U968FYVI6YEOCS/faye_quote_s.jpg Testimonials - A Daughter’s Reflections on APBD “Watching him struggle with this crippling disease filled me with worry and sadness. We were very close, and I cared deeply about him. I felt it was my duty to take care of him, to protect him from a society that often judged him for his disability.” https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633705265347-UPC5H51JOWR0G67ORT3M/weiss-family.jpg Testimonials - A Daughter’s Reflections on APBD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/articles/apbd-a-daughters-perspective monthly 0.5 2023-04-25 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633706879668-6X1PNQ58JNBGC9ZUETV3/a-daughters-perspective.jpeg Testimonials - APBD – A Daughter’s Perspective https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633707339414-BPJ91HGRWGWNRGPVBOHU/Feigy-Weiss-Rosenberg-a-daughters-perspective-600x600.jpeg Testimonials - APBD – A Daughter’s Perspective “I was going through my teens and I found myself forced to grow up quickly. My mother helped me through the unfair reality of caring for the physical wellbeing of my dad, instead of being taken care of by him.” – Feigy Weiss Rosenberg https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1633707393851-V8KKNRPJ9MQQAMU3LQV1/gregory-weiss-a-daughters-perspective-600x452.jpeg Testimonials - APBD – A Daughter’s Perspective “When my first child was born in 2011, I began to see a side of my dad that I hadn’t seen in a long time. He was softening up again. He couldn’t run around with the grandkids or sit on the floor with them as they played or carry them around like most grandfathers could. But he showered his grandkids with love and attention.” – Feigy Weiss Rosenberg https://www.apbdrf.org/articles/robert-zuckerman-and-the-weiss-brothers monthly 0.5 2023-04-25 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/611c2ffc-27ea-4c90-b4fd-c62279cf699b/rzweissbros_narrative.jpg Testimonials - Robert Zuckerman and The Weiss Brothers https://www.apbdrf.org/articles/dr-orhan-akman monthly 0.5 2023-04-25 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/be313d6b-d4af-49c1-b23e-8cef29293b66/dr-hassan.jpg Testimonials - Dr. Hasan Orhan Akman https://www.apbdrf.org/articles/robert-zuckerman-and-judith-kraier monthly 0.5 2023-04-25 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/020c40f4-f25c-4670-aadd-fa5d123b27da/robert-zuckerman-judith-kraier.jpg Testimonials - Robert Zuckerman and Judith Kraier https://www.apbdrf.org/articles/medical-mystery-1 monthly 0.5 2023-04-25 https://www.apbdrf.org/articles/medical-mystery-2 monthly 0.5 2023-04-25 https://www.apbdrf.org/articles/medical-mystery-3 monthly 0.5 2023-04-25 https://www.apbdrf.org/articles/a-jewish-genetic-disease-prompts-life-reinvention monthly 0.5 2023-04-25 https://www.apbdrf.org/articles/he-who-forges-possibilities monthly 0.5 2023-04-25 https://www.apbdrf.org/articles/molecules-littering-the-sidewalk monthly 0.5 2023-04-25 https://www.apbdrf.org/articles/david-story monthly 0.5 2023-04-25 https://www.apbdrf.org/newsletter-archive daily 0.75 2026-03-31 https://www.apbdrf.org/newsletter-archive/march-2026-newsletter monthly 0.5 2026-03-31 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1774981262830-VZZ7FJZPHTUBKWACLUTZ/apbd_mar26_news.png Newsletter Archive - March 2026 • Join new APBD biomarker study + major research updates - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/newsletter-archive/february-2026-newsletter monthly 0.5 2026-03-31 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1771969545101-ZBJWOUV1FROEDXHADGN8/feb-26-newsletter.png Newsletter Archive - February 2026 • Biomarker research news, n-of-1 trial milestone…and more - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/newsletter-archive/january-2026-newsletter monthly 0.5 2026-02-01 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/84811e5b-2454-4198-a8c6-bfd1ea6063fa/apbd_jan_26_newsletter.png Newsletter Archive - January 2026 • Foundation mourns the passing of former board member David Epstein; research updates - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/newsletter-archive/december-2025-newsletter monthly 0.5 2025-12-24 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/01249e5c-460a-4c97-9cff-f5a078c7ad66/apbd_dec_25.png Newsletter Archive - December 2025 Newsletter — 34,000 genetic prevalence of GSD IV preprint; Dr. Matthew Gentry receives Rare Disease Scholar Award - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/newsletter-archive/november-2025-newsletter monthly 0.5 2025-11-18 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/8a9b38c6-9728-4331-986e-e2190d219fd6/apbdrf-25-nov-newsletter.png Newsletter Archive - November 2025 Newsletter — GSD IV Biobank launch; how to create your CRID - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/newsletter-archive/october-2025-newsletter monthly 0.5 2025-11-03 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/336c8206-5f4c-4c2e-adb3-7cb37c5c25a5/apbd_oct_25.png Newsletter Archive - October 2025 Newsletter — Participate in the “Living Rare Study,” Carol Rosenstock shares her APBD journey… - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/newsletter-archive/september-2025-newsletter monthly 0.5 2025-09-30 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/c9b9cb4c-6bd8-4f26-84ab-4d6b34c28674/apbdrf-2509-nl.png Newsletter Archive - September 2025 Newsletter — Foundation mourns the passing of co-founder Michael Weiss; research highlights… - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/newsletter-archive/july-2025-newsletter monthly 0.5 2025-08-01 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/2e24ba62-1d97-4f38-97db-d00111bf97cb/apbd_july__25_newsletter_screenshot.jpg Newsletter Archive - July 2025 Newsletter — New addition to our team, updated prevalence estimates…and more! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/newsletter-archive/may-2025-newsletter monthly 0.5 2025-11-18 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/7caaa08c-bb0d-4f50-bd4c-3a7337ad4dfc/apbd_may_25_news.png Newsletter Archive - May 2025 Newsletter — Progress with a noteworthy therapy; presymptomatic diagnoses;…and more! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/newsletter-archive/april-2025-newsletter monthly 0.5 2025-05-06 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/993f0acb-6685-4921-8bac-72fc6e119727/apbd_apr_25.jpg Newsletter Archive - April 2025 Newsletter —Rallying for Research, COMBINEDBrain partnership…and more! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/newsletter-archive/march-2025-newsletter monthly 0.5 2025-03-31 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/424b21f6-79b8-4ae7-8717-93e6dc4defd4/apbd-march-newsletter.jpg Newsletter Archive - March 2025 Newsletter —International Patient Chat; Research Highlights; … and more! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/newsletter-archive/february-2025-newsletter monthly 0.5 2025-03-06 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1fdb0c9a-3c2f-413b-bb4a-c49db147229f/apbdrf-feb-newsletter.png Newsletter Archive - February 2025 Newsletter — Recognizing Rare Disease Day; biomarker studies; and more!; … - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/newsletter-archive/january-2025-newsletter monthly 0.5 2025-02-17 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/9427c811-3abb-4e5c-bc8c-00bd1285bb3e/apbd_news_2501_1.png Newsletter Archive - January 2025 Newsletter — APBD research grants awarded; join our Rare Disease Day efforts; … - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/newsletter-archive/february-2023-newsletter monthly 0.5 2025-02-14 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/6566d30d-b371-4aa3-8764-c24140095575/Captura+de+pantalla+2023-03-13+a+la%28s%29+17.40.41.png Newsletter Archive - February 2023 Newsletter — Rare Disease Day; a Mother’s Perspective…and more! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/q-and-a daily 0.75 2026-01-21 https://www.apbdrf.org/q-and-a/qa-with-felix-nitschke-mayank-verma-and-nirbhay-yadav monthly 0.5 2026-01-21 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/86be978e-fa97-41e7-b344-0f02027d80a8/Nitscke_Verma_Yadav+image.png Q&As - Q&amp;A with Felix Nitschke, PhD, Mayank Verma, MD, PhD, and Nirbhay Yadav, PhD - Make it stand out From left to right: Dr. Felix Nitschke, Dr. Mayank Verma, and Dr. Nirbhay Yadav https://www.apbdrf.org/q-and-a/qa-with-wyatt-yue-phd monthly 0.5 2026-01-21 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/677c1022-b9a9-4bca-b78a-664a6d63bc43/Dr_Yue_picture.jpg Q&As - Q&amp;A with Wyatt Yue, Ph.D. - Make it stand out Dr. Wyatt Yue, Newcastle University https://www.apbdrf.org/q-and-a/qa-with-priya-kishnani-and-rebecca-koch monthly 0.5 2026-01-21 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1cc7b506-4a2e-429b-ab94-b4a145ed8bf2/Rebecca_Koch.jpg Q&As - Q&amp;A with Priya Kishnani, MD, MBBS and Rebecca Koch, PhD, RDN, LDN - Make it stand out Priya Kishnani, MD, MBBS and Rebecca Koch, RDN, LDN, PhD at Duke University Medical Center https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/89c2db11-4885-439b-98b6-3f66343adf7d/Priya_Kishnani.jpg Q&As - Q&amp;A with Priya Kishnani, MD, MBBS and Rebecca Koch, PhD, RDN, LDN - Make it stand out Some of the members of the Kishnani-Koch Lab From left to right: Priya Kishnani, MD, MBBS; Jeong-A Lim; Neha Regmi, MBBS, MD; Rebecca Koch, PhD, RDN, LDN; Garima Shrivastava, PhD; Su Jin Choi, PhD; Fiona Weaver, MS. https://www.apbdrf.org/q-and-a/qa-with-or-kakhlon-phd monthly 0.5 2025-06-02 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/2e7f7820-4300-4d79-bd9d-1160b811b4f1/Kakhlon_Laboratory.jpg Q&As - Q&amp;A with Or Kakhlon, PhD - Make it stand out Or Kakhlon’s Laboratory Team and Their Families Share Smiles at a Recent Get-Together https://www.apbdrf.org/q-and-a/qa-with-dr-gentry monthly 0.5 2025-06-02 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/fec3c88d-5eda-4a43-b6ae-9ec45c5aca88/dr-gentry.jpeg Q&As - Q&amp;A with Matthew Gentry, PhD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/eed02669-dd5f-45a8-b035-a5fafaadbef0/PastedGraphic-3-1200x675.jpeg Q&As - Q&amp;A with Matthew Gentry, PhD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/q-and-a/qa-with-dr-minassian monthly 0.5 2025-06-02 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/a611563d-0287-4189-9900-0194edc82bc5/Minassian-Lab_12-11-2023.jpeg Q&As - Q&amp;A with Berge Minassian, MD - Make it stand out Dr. Minassian and his team https://www.apbdrf.org/research-highlights daily 0.75 2025-10-28 https://www.apbdrf.org/research-highlights/gene-targeted-therapy monthly 0.5 2025-10-28 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1758657082106-OBPKUJLVO0KS844AARRL/Research+Highlight+graphic_92025+%281%29.png Research Highlights - Gene-targeted Therapy -- Antisense Oligonucleotides -- Correct Intronic Variant and Restores GBE Enzyme Activity in Patients’ Cells - Make it stand out The intronic mutation was discovered and initially evaluated by Dr. Akman (pictured), laying the groundwork for n-Lorem’s design of ASO treatments for intronic APBD patients. https://www.apbdrf.org/research-highlights/rare-genomes-project-researchers-update-the-global-genetic-prevalence-of-gbe1-related-diseases-to-34000 monthly 0.5 2025-08-18 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1754065399710-EJMPS6FC0HFLLT3ALF4Y/GBE1-related-diseases_map.jpg Research Highlights - Rare Genomes Project Researchers Update the Global Genetic Prevalence of GBE1-related Diseases to 34,000 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/research-highlights/natural-history-study-of-hepatic-glycogen-storage-disease-type-iv-and-comparison-to-gbe1ys-ys-model monthly 0.5 2025-02-14 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/3dacecc4-0929-489d-9ad0-3744972045fa/blank100.png Research Highlights - Natural History Study of Hepatic Glycogen Storage Disease type IV and Comparison to Gbe1ys/ys Model - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/95a543df-e5b5-4a83-850a-0b1f43dc7745/Kiely-Koch.jpg Research Highlights - Natural History Study of Hepatic Glycogen Storage Disease type IV and Comparison to Gbe1ys/ys Model - Make it stand out Dr. Bridget Kiely (left) and Dr. Rebecca Koch (right) https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/3dacecc4-0929-489d-9ad0-3744972045fa/blank100.png Research Highlights - Natural History Study of Hepatic Glycogen Storage Disease type IV and Comparison to Gbe1ys/ys Model - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/research-highlights/understanding-polyglucosan-body-formation-in-apbd-lafohot-off-the-press-development-of-the-apbd-sq-a-novel-patient-reported-outcome-for-health-related-quality-of-life-in-apbd monthly 0.5 2025-02-14 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/3dacecc4-0929-489d-9ad0-3744972045fa/blank100.png Research Highlights - Hot Off The Press: Development of the APBD-SQ, a novel patient-reported outcome for health-related quality of life in Adult Polyglucosan Body Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/0c1a6a46-2452-49c9-b5f7-863abdcb03cd/hp_Image_1.png Research Highlights - Hot Off The Press: Development of the APBD-SQ, a novel patient-reported outcome for health-related quality of life in Adult Polyglucosan Body Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/3dacecc4-0929-489d-9ad0-3744972045fa/blank100.png Research Highlights - Hot Off The Press: Development of the APBD-SQ, a novel patient-reported outcome for health-related quality of life in Adult Polyglucosan Body Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/3dacecc4-0929-489d-9ad0-3744972045fa/blank100.png Research Highlights - Hot Off The Press: Development of the APBD-SQ, a novel patient-reported outcome for health-related quality of life in Adult Polyglucosan Body Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/8f237c1b-a652-4124-99e6-0ec54033173d/hp_Image_2.png Research Highlights - Hot Off The Press: Development of the APBD-SQ, a novel patient-reported outcome for health-related quality of life in Adult Polyglucosan Body Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/3dacecc4-0929-489d-9ad0-3744972045fa/blank100.png Research Highlights - Hot Off The Press: Development of the APBD-SQ, a novel patient-reported outcome for health-related quality of life in Adult Polyglucosan Body Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/research-highlights/understanding-polyglucosan-body-formation-in-apbd-lafora-disease-and-rbck1-deficiency-disease monthly 0.5 2025-02-14 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1720442281963-CDP68SO30P3VJB2YC60E/Dr.-Mitra-Sharmistha.jpg Research Highlights - Understanding Polyglucosan Body Formation in APBD, Lafora Disease, and RBCK1-Deficiency Disease - Make it stand out Dr. Sharmistha Mitra https://www.apbdrf.org/research-highlights/proteomic-investigations-of-apbd-insights-into-the-pathobiology-of-a-neurodegenerative-disorder monthly 0.5 2025-02-14 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/0ab2d542-3daa-4a81-899a-88ef11a7ca7b/MNatowicz.jpg Research Highlights - Proteomic Investigations of APBD: Insights into the Pathobiology of a Neurodegenerative Disorder - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/research-highlights/expanding-the-understanding-of-the-apbd-continuum monthly 0.5 2025-02-14 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1706890302614-GDITSTSA9X34JDR6QHZ3/IMG_9392_Original_re+%281%29.jpg Research Highlights - Case Report: Expanding the Understanding of the APBD Continuum: Novel Presentations, Diagnostic Pitfalls, and Clinical Pearls - Make it stand out Dr. Priya Kishnani and Dr. Rebecca Koch https://www.apbdrf.org/e2- daily 0.75 2025-08-12 https://www.apbdrf.org/e2-/blog-post-title-one-8wmat-fht7f monthly 0.5 2025-08-12 https://www.apbdrf.org/e2-/blog-post-title-one-8wmat monthly 0.5 2025-08-12 https://www.apbdrf.org/e2-/blog-post-title-two-bx32y monthly 0.5 2025-08-12 https://www.apbdrf.org/e1- daily 0.75 2025-08-12 https://www.apbdrf.org/e1-/blog-post-title-four-ah62z monthly 0.5 2025-08-12 https://www.apbdrf.org/e1-/apbd-tour-de-friends-2024 monthly 0.5 2025-08-12 https://www.apbdrf.org/e1-/blog-post-title-four-ah62z-cyf4k monthly 0.5 2025-08-12 https://www.apbdrf.org/e1-/blog-post-title-four-ah62z-cyf4k-awcta monthly 0.5 2025-08-12 https://www.apbdrf.org/e1-/blog-post-title-four-ah62z-cyf4k-awcta-hxeat monthly 0.5 2025-08-12 https://www.apbdrf.org/e1-/blog-post-title-four-ah62z-cyf4k-awcta-hxeat-42n4h monthly 0.5 2025-08-12 https://www.apbdrf.org/home daily 1.0 2026-02-24 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/794954f6-f6fd-47ab-bec1-06afbc90fb22/create-crid+%281%29.png Home - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/7b7452b3-de00-4492-a110-6de3115806d3/apbd-patient-chat.jpg Home - Patient Chat Join us on the fourth Wednesday of every month More info https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/97849845-74ea-4cbc-8764-d19fb4a35597/apbd-caregiver-chat-img.jpg Home - Caregiver/ Family Chat Join us on the second Thursday of every month More info https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/00e1a54a-d351-4cce-a1d8-1da5bf5e10d5/apbdrf_tour_de_friends.png Home - APBD Tour de Friends Rally for Research More info https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/5fb06a9c-0297-461d-9b01-26b9f4456ad9/rare-disease-day.jpg Home - Rare Disease Day More info https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/fcc56169-dc99-47b1-8f17-fa986f67f295/conferences.jpg Home - Scientific Conferences More info https://www.apbdrf.org/what-is-apbd/apbd-sign-and-symptoms daily 0.75 2026-03-27 https://www.apbdrf.org/about-us/scientific-medical-advisory-board daily 0.75 2025-09-22 https://www.apbdrf.org/about-us/history daily 0.75 2023-08-07 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1644515841026-H5QF936Z38759BLB8XRH/Weiss+Brothers.JPG History - Make it stand out The Weiss Brothers https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1630936316059-IU2IS39NL6LYB9VZ9CQU/APBDrf-TIMELINE.png History - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/f19440a4-908b-4330-979b-887905e166d3/timeline-2+%281%29.png History - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/ea81908f-a2e9-4882-a0ac-73710647ec92/timeline-3+%281%29.png History - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/about-us/board-members daily 0.75 2026-01-15 https://www.apbdrf.org/research/state-of-the-science daily 0.75 2025-12-17 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/d088506b-86b6-4dca-9b59-7e7ba1e3875c/State+of+the+Science_Sep_25.png State of the Science - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/diagnosed/health-care-providers-directory daily 0.75 2025-12-17 https://www.apbdrf.org/doctors/cap daily 0.75 2023-08-07 https://www.apbdrf.org/what-is-apbd daily 0.75 2026-03-27 https://www.apbdrf.org/order-apbd-brochures daily 0.75 2021-08-24 https://www.apbdrf.org/what-is-apbd/testing-info daily 0.75 2026-02-05 https://www.apbdrf.org/doctors/fan daily 0.75 2023-08-07 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1631541342494-45AI4J0H3C0LNCASINOD/apbdfanlogo-1.png NORD - APBD Intradisease Registry FAN - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/get-connected/volunteer daily 0.75 2025-06-03 https://www.apbdrf.org/what-is-apbd/brochures daily 0.75 2026-01-13 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/aa978b68-f609-4eac-9424-ed1bc05b5afc/general-brochure.jpg Brochure - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/f62e33ac-bd18-478b-a8ca-64fcbf74dd4b/physician-brochure.png Brochure - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/ways-to-give/apbd-planned-giving-program daily 0.75 2025-09-12 https://www.apbdrf.org/about-us/newsletter-archive daily 0.75 2026-03-31 https://www.apbdrf.org/get-connected/newsletter daily 0.75 2026-02-12 https://www.apbdrf.org/about-us/report-15-years-of-progress daily 0.75 2025-09-23 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1631280321047-I0502Q76C6REXLSX6DKK/APBD_2020_AR-400x518.jpeg Report: 15 Years of Progress - Make it stand out Click here to view our Report: 15 years of Progress https://www.apbdrf.org/events/family-caregiver-chat daily 0.75 2023-08-07 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/a4917f47-8b25-4939-90f9-c1d113e801db/apbd-caregiver-chatw.jpg Family / Caregiver Chat Events - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/caregiver-chat-sign-up daily 0.75 2021-09-14 https://www.apbdrf.org/events/scientific-conferences daily 0.75 2025-06-03 https://www.apbdrf.org/get-connected/contact-us daily 0.75 2026-02-03 https://www.apbdrf.org/events/patient-chat daily 0.75 2026-03-16 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/3678956b-2b04-40cd-afc6-aeb75e7faadc/apbd-patient-chat-w.jpg Patient Chat - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/diagnosed/personal-narratives daily 0.75 2026-03-23 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/ef0713af-7ce7-4316-992f-b1de1046ac24/videos.jpg Personal Narratives - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/diagnosed/registry daily 0.75 2025-09-12 https://www.apbdrf.org/about-us/news-releases daily 0.75 2023-08-07 https://www.apbdrf.org/events/workshops daily 0.75 2025-08-01 https://www.apbdrf.org/about-us/mission daily 0.75 2025-09-23 https://www.apbdrf.org/events/apbd-tour-de-friends-rally-for-research daily 0.75 2025-08-12 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/ba50d917-43aa-4b60-b2f4-5368234a70f9/apbdrf_tour_de_friends_w.png APBD Tour de Friends Rally for Research - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/ways-to-give/recurring-donations daily 0.75 2026-01-01 https://www.apbdrf.org/get-connected/newsletter-archive/february-2023 daily 0.75 2023-03-13 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/6566d30d-b371-4aa3-8764-c24140095575/Captura+de+pantalla+2023-03-13+a+la%28s%29+17.40.41.png https://www.apbdrf.org/events/workshops/2020-biomarker-workshop daily 0.75 2025-06-03 https://www.apbdrf.org/what-is-apbd/practice-gpractice-guideline-card-ok daily 0.75 2023-04-24 https://www.apbdrf.org/ways-to-give/tribute-and-memorial-gifts daily 0.75 2025-08-18 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/47c3a184-0569-4899-8f49-9ebd5a0015fc/tribute-gift.jpg https://www.apbdrf.org/what-is-apbd/symptom-checker daily 0.75 2025-09-08 https://www.apbdrf.org/events/fda-patient-listening-sessions daily 0.75 2025-08-12 https://www.apbdrf.org/ways-to-give/support-your-1-cause-through-your-ira daily 0.75 2025-06-03 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/a5626470-0da5-48b8-b30f-b10418934a1a/Give.jpg Make a Gift with IRA - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/research/q-a daily 0.75 2026-01-21 https://www.apbdrf.org/research/research-highlights daily 0.75 2025-02-14 https://www.apbdrf.org/diagnosed/newly-diagnosed daily 0.75 2026-04-03 https://www.apbdrf.org/diagnosed/natural-history-study daily 0.75 2025-09-12 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/ea576684-4591-4814-a23a-7a71490d0625/image1.png Natural History Study - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/e5042f4e-8c16-4a16-9aff-21ab011cf3b1/nhs_cover.jpg Natural History Study - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/research/publications daily 0.75 2025-06-02 https://www.apbdrf.org/research/past-grant-recipients daily 0.75 2025-11-17 https://www.apbdrf.org/events/2022-scientific-conference daily 0.75 2025-06-03 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1654528004279-X89OJPGJ6NGLCZHV4Q2P/banner.jpeg 2022 Scientific Conference - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1654528097461-FQ9WVP0Z7PZOT85QM4K6/APBD-Conference-Speaker-Collage_wide.jpeg 2022 Scientific Conference - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1654528155644-8RSRG9OXF1HEJN75P5KT/Attendees-Graphic-May-20-2022-1.jpeg 2022 Scientific Conference - Make it stand out Over 140 Conference attendees – from Brazil, Canada, France, Israel, the Netherlands, Poland, the UK and the US – joined us. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1654528182035-Q9GZLOXKOOXI5YT44UHM/2022-APBD-Conference-Group-Photo-Wide-1.jpeg 2022 Scientific Conference - Make it stand out Attendees were researchers, health care providers, industry and non-profit representatives, and individuals and family members impacted by APBD and allied diseases. The virtual Conference made apparent that together we are a growing global force! https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1654528309916-E163L91MPMNPRNDS04D2/Foundation-Partner-Logos-1.jpeg 2022 Scientific Conference - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/events/other-events daily 0.75 2025-08-12 https://www.apbdrf.org/what-is-apbd/apbd-gsd-iv-guideline daily 0.75 2025-09-30 https://www.apbdrf.org/events/rare-disease-day daily 0.75 2025-09-12 https://www.apbdrf.org/diagnosed/living-rare-study daily 0.75 2025-10-22 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/449983ef-e94c-4b4c-9380-999d603f4612/Living+Rare+Study+%281%29.PNG NORD Living Rare Study - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/ways-to-give/donations daily 0.75 2026-01-13 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/cea0d7d1-b127-4c4b-b379-4417fb3ef9c3/fullsizeoutput_f89-1.jpeg Donate - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/diagnosed/deep-intronic-mutation daily 0.75 2026-02-05 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/7a3eabed-bccb-4230-9ee6-b3571cd20233/dna-8346570_1280.jpg APBD and the Deep Intronic GBE1 Gene Mutation - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/diagnosed/create-your-clinical-research-id daily 0.75 2025-12-22 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/c9100882-2fad-47c9-aeac-c49fcd58f97d/crid-ew.jpg Create your Clinical Research ID - Make it stand out Grace Vigianno, at COMBINEDBrain, recently joined our APBD Patient Chat to discuss the importance of using the CRID. Watch the video here… https://www.apbdrf.org/get-connected/donor-newsletter daily 0.75 2026-01-15 https://www.apbdrf.org/diagnosed/navigating-presymptomatic-diagnosis daily 0.75 2026-02-05 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/871ab879-4a26-49b1-ad60-68927352e980/Presymptomatic-Diagnosis+%281%29.jpg Navigating a Presymptomatic Diagnosis - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/1748534557245-6UAW41WTOX3RI6R420BT/image3-1200x675.jpg Navigating a Presymptomatic Diagnosis - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/decoding-apbd-inheritance-a-guide-to-carrier-screening-and-family-planning daily 0.75 2026-02-05 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/c57944b7-dee4-430e-91f8-23cb018128e0/APBDRF-Carrier-Screening-Article-image-1-1200x927.png Decoding APBD Inheritance: A Guide to Carrier Screening and Family Planning - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/10327a5c-1f8f-40c2-869d-53bd060aed39/APBDRF-Carrier-Screening-Article-image2-1200x927.png Decoding APBD Inheritance: A Guide to Carrier Screening and Family Planning - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/get-connected/sm-newsletter daily 0.75 2026-02-13 https://images.squarespace-cdn.com/content/v1/603505e210bb8a4aea2c3d60/4b45ce07-fdb7-4648-86bf-f26b168b25fa/apbd-newsletter-signup.jpg Sign up for Newsletter (Social Media) - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.apbdrf.org/get-connected/sm-newsletter-2 daily 0.75 2026-02-13 https://www.apbdrf.org/apbdrf-glossary-of-terms daily 0.75 2026-03-26 https://www.apbdrf.org/diagnosed/ucla-biomarker-study daily 0.75 2026-03-27 https://www.apbdrf.org/research/volunteer-for-research daily 0.75 2026-03-31