News Releases
Foundation to Host APBD Scientific and Community Conference
We are excited to share that we are hosting our virtual APBD Scientific and Community Conference on September 18-19, 2024. Join us as we bring together stakeholders in the APBD community – researchers, health care providers, industry partners, and individuals and [Read More]
APBD Tour de Friends Team Raises a Record-Breaking $134,000 During the 2024 Million Dollar Bike Ride For Rare Disease Research
On June 8th, our APBD Tour de Friends team gathered on the ground in Philadelphia, biking, walking, and scootering, while over 271 virtual participants and donors joined in support from across the country. Together, we soared to new heights [Read More]
APBD Research Foundation’s Focus Group Brings APBD and GSD IV Communities Together for the First Time
On May 6, 2024, the APBD Research Foundation hosted a virtual Focus Group that brought together, for the first time, over 50 participants representing the Adult Polyglucosan Body Disease (APBD) and Glycogen Storage Disease Type IV (GSD IV) communities. [Read More]
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 [Read More]
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 [Read More]
Duke University and Research Fund of the Hadassah Medical Organization Scientists Awarded Million Dollar Bike Ride Grants for APBD Research
The APBD Research Foundation is pleased to share that Or Kakhlon, PhD (Research Fund of the Hadassah Medical Organization) and Priya Kishnani, MD, MBBS and Rebecca Koch, PhD, RDN, LDN (Duke University Medical Center) are the recipients of rare disease [Read More]