Voice of the Patient Report Submitted: A Powerful Milestone for the Angelman Syndrome Community
The Voice of the Patient Report from the Angelman syndrome EL-PFDD Meeting has been submitted to the FDA, capturing families’ lived experiences to help drive meaningful treatments forward.”
February 2025: Advocacy updates and actions to take
Despite the postponement of the EL-PFDD meeting, FAST and ASF continue joint advocacy work, from Congressional Advocacy Day to new toolkits and a rare disease policy letter to the administration.