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The PFDD Survey is now open

We are pleased to announce that the Externally Led Patient Focused Drug Development (EL-PFDD) Survey is now open. This is an opportunity for parents and caregivers to share your experiences on living with the condition, including our perspectives on treatments for your loved ones, with drug developers, clinicians, and FDA staff. Results of this survey will help inform the discussion at the January 2025 meeting, so your participation is critical.

Please head to the new Angelman Syndrome Advocacy Site where the community can find all information regarding joint advocacy efforts between ASF and FAST.

Begin the survey here.