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APBD Community Recognizes Rare Disease Day

We're excited about joining the National Organization for Rare Disorders and the broader rare disease community around the world once again in celebrating Rare Disease Day. Leading up to February 28, we asked our community to wear zebra-striped [...]

February 27th, 2023|

APBD Research Foundation Appoints its First Executive Director

Dear APBD community, On behalf of the Board of Directors, we are delighted to announce Natacha Pires as the APBD Research Foundation’s first executive director.  Natacha brings over 15 years of nonprofit/business management, communications, and development experience along with [...]

February 27th, 2023|

JUST PUBLISHED: Clinical Practice Guideline for APBD and GSD IV Diseases

The APBD Research Foundation and the Association for Glycogen Storage Disease (AGSD) are excited to announce the publication of “Diagnosis and Management of Glycogen Storage Disease Type IV, Including Adult Polyglucosan Body Disease: A Clinical Practice Resource” in the [...]

February 15th, 2023|

Bruce Rosky Talks About APBD and Caregiving on KevinMD.com

We are excited to share that Bruce Rosky’s narrative on caregiving for his wife and hero, Jennifer, who was diagnosed with APBD in 2016, was published on KevinMD.com. Click here to read the narrative... [...]

January 18th, 2023|

Meet Camille Keene!

Camille with “Bunny” at Meadowbrook Stables in Chevy Chase, Maryland We are pleased to introduce you to Camille Keene, the newest addition to our team. We partnered with Second Day to find Camille who is studying [...]

October 19th, 2022|

An APBD Research Funding Opportunity Through UPenn’s MDBR Program

The APBD Research Foundation in conjunction with the University of Pennsylvania has launched a call for APBD research proposals. This Request For Applications (RFA) is made on behalf of the University of Pennsylvania’s Orphan Disease Center (ODC). Funds for the APBD [...]

August 26th, 2022|

Jennifer Orthmann-Murphy, MD, PhD Joins the Foundation’s Scientific Advisory Board

The APBD Research Foundation today announced that Jennifer Orthmann-Murphy, MD, PhD has joined the Foundation’s Scientific Advisory Board. Dr. Orthmann-Murphy is Assistant Professor of Neurology and Co-Director of Age Span Fellowship in MS/Neuroinflammatory Disorders at the University of Pennsylvania.  “We [...]

July 7th, 2022|

First Virtual APBD Scientific & Community Conference is a Success!

On May 11-12, over 140 attendees joined the APBD Research Foundation for its 2022 APBD Scientific & Community Conference. The virtual event brought together stakeholders in the APBD community – researchers, health care providers, industry partners, and individuals and [...]

May 13th, 2022|

APBD Biomarkers workshop #2

The 2021 APBD Biomarkers Symposium brought together APBD clinicians and researchers, related disease and technology experts, and industry partners to discuss promising biomarker research. Short presentations were followed by interactive discussions with all symposium participants. The symposium goal was to [...]

November 18th, 2021|

APBD Ad Debuts at Rare New England’s Annual Conference

October 25, 2021 We're excited to share this ad that we developed for the Rare New England's (RNE) Annual Conference this past October. Raising the public profile and recognizing the hallmark symptoms of APBD is a crucial facet of [...]

October 25th, 2021|
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