NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA).
SIGN THE PETITION
NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA).
SIGN THE PETITION
Advocating for those affected by Ataxia is an important part of our mission at NAF. Advocacy expands our partnerships with organizations and policy makers to make a difference for people affected by Ataxia. Your involvement allows us to share your stories with policy makers and pharmaceutical companies to build awareness, accelerate drug development, and ensure access to care and treatment services.
Join us in opportunities to meet with members of Congress! The focused attention of a policymaker or a congressional staffer is precious. Most meetings last only 15 – 30 minutes so it’s important to make the most of every second. This video will equip you with the knowledge to optimize that time.
Join NAF and our partners at FARA in advocating for Ataxia and rare disease related policies during our annual United Against Ataxia Hill Day on September 17th! Advocates will have the opportunity to attend virtual meetings with members of congress and their staffers to tell their stories and relay the importance of supporting NAF’s legislative initiatives.
Save the Date: Wednesday, September 17, 2025
Visit www.ataxia.org/HillDay to learn more!
Want to stay in-the-know about advocacy issues? We send a quarterly advocacy newsletter and periodic emails to those on our advocacy email list about current legislative issues and things you can do to get involved. To join, become a member of NAF or update your membership information at www.ataxia.org/JoinNAF. Make sure to select “Advocacy” in the Member Interests section.
You can help us with our efforts by letting us know about legislative issues that you would like us to be aware of. You can also inform us about national or state legislators that you are in regular contact with or know personally. Email NAF’s Community Program and Services Director, Lori Shogren, at lori@ataxia.org.
