News Releases
Foundation Partners with Alex TLC and AGSD-UK to Host a Special Patient Chat Aimed at Engaging the International Community
The APBD Research Foundation is excited to partner with UK-based Alex The Leukodystrophy Charity (Alex TLC) and Association for Glycogen Storage Disease - UK (AGSD-UK) on a special APBD Patient Chat that aims to engage the global community. With this unique Chat offering, we [Read More]
APBD Community Joins Millions of Rare Advocates Around the World for Rare Disease Day
The APBD Research Foundation rallied its community to mark Rare Disease Day on February 28, joining the National Organization for Rare Disorders and rare disease advocates around the world. In the lead-up to the day, we [Read More]
CZI’s Cycle 1 Rare As One Impact Report Features APBDRF’s Work, Alongside Peers, to Advance Rare Disease Research
Click here to read the Report. Check out pages 16-17 to read APBDRF's key achievements during the grant. We are excited to share the recently released Chan Zuckerberg Initiative (CZI) Rare As One Impact Report. [Read More]
Melanie Robinson’s Caregiving Journey Reaches Millions
We are excited to share that Melanie Robinson’s narrative on caregiving for her mother, Ginny, who was diagnosed with APBD in 2018, has been published on KevinMD.com. Read Melanie’s narrative Melanie [Read More]
University of Texas Southwestern Medical Center and Newcastle University Scientists Awarded Million Dollar Bike Ride Grants for APBD Research
The APBD Research Foundation is pleased to share that Felix Nitschke, PhD (University of Texas Southwestern Medical Center) and Wyatt Yue, PhD (Newcastle University) are the recipients of rare disease research grants from the University of Pennsylvania’s Million Dollar [Read More]
Dr. Larry Arky’s APBD Journey Reaches Millions
We are excited to share that a powerful narrative from OB/GYN Dr. Larry Arky who was diagnosed with APBD in April of 2023, has been published on KevinMD.com. Read Dr. [Read More]