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Parents and Caregivers:
Update regarding the EL-PFDD Meeting for AS
The virtual meeting has been rescheduled to April 7, 2025 at 10am EST!
The Angelman Syndrome Hope in Action Center
Welcome
The Foundation for Angelman Syndrome Therapeutics (FAST) and the Angelman Syndrome Foundation (ASF) formed a strategic partnership to drive a coordinated, multi-tiered advocacy strategy to improve the lives of those affected by Angelman syndrome.
Both organizations understand the need to ensure key decision makers understand Angelman syndrome to influence and inform policy, legislation, and funding related to AS.
We cannot accomplish our goals without YOU – caregivers, family, friends, research, and clinical partners. Please consider joining the AS Advocacy movement: Learn More
Sincerely,
Ryan Fischer (COO of FAST) & Amanda Moore (CEO of ASF)
Multi-Tiered Approach to Advocacy
FDA
Congress
Congress
- Increase the FDA’s understanding of the AS population through surveying the community on key areas the FDA needs input on.
- Directly engage members of FDA through public meetings .
- Work collaboratively with regulators on biomarker and endpoint development.
Congress
Congress
Congress
- Increase the federal focus and funding on Angelman syndrome
- Support, lead, or monitor legislation related to improving rare disease drug development and improving services and support for caregivers and disability policy
- Create relationships with members of Congress and turn them into Champions for AS
State
Congress
State
- Advocate for improving state programs and funding related to long-term care, therapies, caregiver expenses, disability policy, and waiver programs
- Help spread awareness by obtaining proclamations for Angelman syndrome awareness day
- Support state legislation aimed at newborn screening