ASF Advocacy Taskforce

The ASF Advocacy Task Force identifies, considers and develops positions on long-term policy issues that can impact the Angelman community and serves as a resource for legislators and their aides. This is a non-partisan committee that does not endorse any political candidate or party.  

If you are looking for a way to advocate for positive change, this is the group for you! 

What does the ASF Advocacy Task Force do:

• Advocate for access to affordable and accessible health care
• Join the Rare Disease Caucus
• Participate in Rare Disease Week where we hold meetings with local representatives to advocate on issues crucial to the AS community. 
• Advocate for continued funding for FDA to advance rare disease trials and treatments.
• Support Newborn Screening Acts Saves Life
• Provides information to the Angelman community about important regulatory and legislative issues at both the state and federal levels that may have ramifications on the AS community.
• Creating a Burden of Disease Report that provides a comprehensive assessment of the total economic burden of AS in a single year. This will help ensure that the experience of the AS community is reflected accurately in policy discussions.
• Some members also serve on the Community Congress. 
• Work with other organizations that advocate for rare diseases such as Everylife Foundation and GlobalGenes.

The committee is lead by Becky Burdine and Susan Ravellette. Expected commitment is approximately 5 hours per month. 

Open to new members