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Lo
Stock image of people figures with speaking bubbles above heads.

The EL-PFDD Meeting for AS has concluded.

Held virtually on April 7, 2025 from 10:00am-3:00pm EST

Watch the recording

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

A scale with two sides balanced.

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.


A drawing photo of the white house.

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 

The United States of America

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  

Upcoming Events

Join us below at these dedicated Angelman syndrome events to support the advocacy efforts towards an approved therapeutic.

Mar 4-5, 2025

2nd Annual Angelman Syndrome Congressional Advocacy Day - Training + Day on the Hill

All day

Washington, DC

Event Details

Mar 4-5, 2025

2nd Annual Angelman Syndrome Congressional Advocacy Day - Training + Day on the Hill

March 4-5th, 2025 - Washington, DC

Advocate Training: Tuesday, March 4th from 3pm-8pm ET

Hill Meetings: Wednesday, March 5th from 9am-5pm ET 


P...

Event Details

All day

Washington, DC

April 7, 2025

Externally Led Patient Focused Drug Development (EL-PFDD) Meetingfor Angelman Syndrome

10am

-

3pm

Virtual

Event Details

April 7, 2025

Externally Led Patient Focused Drug Development (EL-PFDD) Meetingfor Angelman Syndrome

We are thrilled to have a new date and the opportunity for key decision-makers to hear our community's voice about the lived experience of o...

Event Details

10am

-

3pm

Virtual

Contact Us

Get involved today!

If you are interested in getting involved or have a question, please email us today.

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