APBD Featured in New Book, Kaleidoscope: Rare Disease Stories

Kerry Wong We are excited to share that Sarah William’s APBD journey is featured in the newly published book, Kaleidoscope: Rare Disease Stories, by Kerry Wong. The stories featured in this book are firsthand narratives from individuals [...]

March 18th, 2024|

APBD Community Shines Bright on Rare Disease Day

The APBD community joined the National Organization for Rare Disorders and rare disease communities around the world to celebrate Rare Disease Day on February 29th. Leading up to the day, we urged our community to wear [...]

February 29th, 2024|

Meet Anesa Kajtazovic, the Newest Addition to our Team!

The APBD Research Foundation is delighted to introduce our newest team member, Anesa Kajtazovic, who has joined us as our part-time Community Affairs Officer. Anesa brings with her a wealth of experience from the realms of nonprofits and governmental [...]

November 6th, 2023|

Foundation Approves and Implements its 2023-2025 Strategic Plan

We are excited to share the APBD Research Foundation’s 2023-2025 Strategic Plan. This Strategic Plan is the result of efforts spanning eight months, involving our Board of Directors, members of our Scientific Advisory Board, staff, mentors, and Foundation partners [...]

June 13th, 2023|

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|
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