News Releases
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 [Read More]
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 [Read More]
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 [Read More]
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... [Read More]
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 [Read More]
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 [Read More]