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
Interested in joining an ASF Committee or Group?
Fill out the form below and you will be contacted by a committee member.