The APBD Research Foundation is pleased to share that Or Kakhlon, PhD and Priya Kishnani, MD, MBBS and Rebecca Koch, PhD, RDN, LDN are the recipients of rare disease research grants from the University of Pennsylvania’s Million Dollar Bike Ride program.

Golden Heart Flower, Ltd. announced that the U.S. Food and Drug Administration (FDA) has granted Orphan Drug Designation for the company’s product GHF-201 to treat glycogen storage disease type IV, including APBD.

The APBD Foundation is excited to announce key additions to its Scientific and Advisory Board (SMAB).

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.

The APBD Research Foundation is excited to contribute to the Glycogen Storage Disease (GSD) Value Project. This initiative will develop an internationally applicable set of patient-centered health outcomes that are relevant to individuals with liver glycogen storage diseases and other GSD subtypes.

The APBD Research Foundation in partnership with the Orphan Disease Center (ODC) at the University of Pennsylvania is pleased to announce the 2023 Million Dollar Bike Ride Pilot Grant Program.

The APBD Research Foundation is delighted to announce the appointment of Michael Canmann to its Board of Directors.

We are thrilled to announce that the APBD Research Foundation has partnered with Probably Genetic to increase access to genetic testing within our community.

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.

The APBD Research Foundation is delighted to announce that Paul Ashley has joined the Board of Directors.

We are excited to share the APBD Research Foundation’s 2023-2025 Strategic Plan.

The APBD Research Foundation is delighted to announce that Art Glassman and Beth Katz have joined the Board of Directors.

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 of Pennsylvania’s Million Dollar Bike Ride (MDBR) program.

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.

On behalf of the Board of Directors, we are delighted to announce Natacha Pires as the APBD Research Foundation’s first executive director.

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 scientific journal, Molecular Genetics and Metabolism.

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.

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 Political Science at Howard University. Camille will help us develop key communications that support our efforts to grow our programs and make treatments and a cure a reality.

The APBD Research Foundation in conjunction with the University of Pennsylvania has launched a call for APBD research proposals.