December 21, 2021

On October 28, 2021, the APBD Research Foundation engaged the U.S. Food and Drug Administration (FDA) in a Patient-Led Listening Session to share the burden of APBD and the needs of our community.

Our Foundation applied for and received approval from the FDA to host the APBD Listening Session with the FDA.

During the Listening Session, representatives from our Foundation and the broader community shared their personal APBD experiences as well as its impact on their family members. They also discussed the diagnostic challenges and the physical, emotional, and financial toll that are, unfortunately, echoed in so many patients’ experiences. Given that there are no treatments or a cure for APBD, they thoughtfully expressed what would be meaningful impacts when it comes to a potential therapy.

Jeff Levenson, co-president of the APBD Research Foundation, shared, “We illuminated for FDA staffers the lived experience of APBD and how it impacts and destroys lives. We also expressed our commitment to bring the patients’ perspective to every stage of therapeutic development and approval.”

This meeting was only the beginning of an ongoing conversation with the FDA. We look forward to sharing more updates as we move this important work forward.

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