News Releases

We are thrilled to announce that the APBD Research Foundation has partnered with Probably Genetic to increase access to genetic testing within our community. APBD is an ultra-rare, monogenic, and complex multi-system condition. Because it is difficult for health [Read More]

We had our largest group yet: 290 eager and imaginative riders, walkers, and donors on the APBD Tour de Friends team participated in the 2023 Million Dollar Bike Ride (MDBR) on June 10. It was our eighth consecutive year [Read More]

The APBD Research Foundation is delighted to announce that Paul Ashley has joined the Board of Directors. Paul is based in Calgary and has more than 25 years of sales and account management experience.“We are thrilled to welcome Paul to the [Read More]

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 [Read More]

The APBD Research Foundation is delighted to announce that Art Glassman and Beth Katz have joined the Board of Directors. Art Glassman is a retired estate planning and tax attorney in Minnesota. His late wife, Penny, was diagnosed with [Read More]

The APBD Research Foundation is pleased to share that Matthew Gentry, PhD (University of Florida) and Berge Minassian, MD and Mayank Verma MD, PhD (UT Southwestern Medical Center) are the recipients of rare disease research grants from the University [Read More]