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
Below find links to letters and projects that the ASF has contributed to in order to advocate on behalf of the Angelman community.
Interested in joining an ASF Committee or Group?
Fill out the form below and you will be contacted by a committee member.