APBD Community Shines Bright on Rare Disease Day
February 29th, 2024
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 zebra-striped sunglasses and proudly display their support for research progress, while also encouraging them to share their APBD dreams.
Rare Disease Day is a global movement to raise awareness and generate change for the 400 million people living with over 10,000 rare diseases.
Rare Disease Day is a time for our community to come together in a collective display of support for raising awareness and improving the lives of all individuals and families impacted by rare disease, including APBD.
The zebra, recognized as the official symbol of rare disease, embodies its uniqueness through its distinctive black and white stripes. Just as zebras’ stripes are never the same, individuals sharing an APBD diagnosis are unique individuals with wishes, goals, dreams, and plans.
Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse – but united in purpose. Visit the website, rarediseaseday.org for all of the events and materials produced for this special day.
News Releases
We are thrilled to announce that our community raised an incredible $201,177 during the 2026 APBD Tour de Friends Rally for Research fundraising campaign, exceeding our original goal of $120,000.
The Academy of General Dentistry (AGD) recently awarded the APBD Research Foundation's co-president Dr. Jeff Levenson with the Lifelong Learning & Service Recognition (LLSR). He received this award along with 36 other LLSR recipients during the AGD’s scientific session in Las Vegas, NV on June 27, 2026.
In April 2026, the APBD Research Foundation announced participant recruitment for its APBDRF Drug Repurposing Study initiative in partnership with COMBINEDBrain. We are grateful to the patients and families in our community that have volunteered to provide biosamples to help make this study a reality.
The APBD Research Foundation is pleased to announce the third of our 2025 Rally for Research Pilot Grant Program grant recipients: Rebecca Koch, PhD, RDN at Duke University. Her research project is entitled, Gene Therapy to Treat the Neurophenotype of Glycogen Storage Disease Type IV.
The APBD Research Foundation is pleased to announce the second of our 2025 Rally for Research Pilot Grant Program grant recipients: Mayank Verma, MD, PhD at UTSW Medical Center. His research project is entitled Preclinical Validation and Biomarkers in APBD of a GYS1-ASO Currently in Phase 1 Clinical Trial for Lafora Disease
On behalf of the APBD community, the APBD Research Foundation has responded to the US Food and Drug Administration's (FDA) request for public comments for its recently released draft guidance for the use of the Plausible Mechanism Framework for individualized genetic therapies.
We are excited to launch the 2026 APBD Tour de Friends Rally for Research Fundraising Campaign to raise $150,000.
The APBD Research Foundation is excited to announce an opportunity for you to play a direct role in advancing treatment research. You do not have to leave home to participate.
The APBD Research Foundation is delighted to announce the appointment of Carol Rosenstock to its Board of Directors.