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Amplifying the voice of the Ataxia community

Advocating for those affected by Ataxia is an important part of our mission at NAF. We are providing community members with more opportunities to get involved. Advocacy activities will expand our partnerships with other organizations and policy makers to help make a difference for people affected by Ataxia. Involvement in advocacy gives us a way to get your stories to policy makers and pharmaceutical companies to grow awareness, accelerate drug development, and ensure access to care and treatment services

Become an Ataxia Advocate

Join Our Advocacy Email List

Want to stay in-the-know about advocacy issues? We’ll send 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 Make sure to select “Advocacy” in the Member Interests section. 

Advocacy Training

Your voice matters. Patients, their families, and their caregivers have the power to help change public policy to improve the lives of people living with Ataxia. Knowing where to start to get involved with advocacy work can be hard. NAF is here to help! Our United Against Ataxia Hill Day Training video is a great start! 

Our advocacy partner, EveryLife Foundation for Rare Diseases, also offers a great resource for learning about the legislative process and how to contact your representatives. Check out their advocacy toolkit.

Help Us Declare IAAD from Coast to Coast

You can help us get International Ataxia Awareness Day (IAAD) declared across the country. Contact your mayor or governor to issue an IAAD Proclamation or your state legislators to pass an IAAD Resolution. The Advocacy Toolkit provides an example proclamation, resolution, and letter to your representative. Contact NAF if you pursue a resolution or proclamation so that we can coordinate individual efforts and highlight those that are obtained.

Find Your Local Representative

Want to reach out to your representative about Ataxia initiatives

Congressional Representatives


Advocacy Events

2022 United Against Ataxia Hill Day – September 21st

International Ataxia Awareness Day –

Rare on the Road Leadership Tour –

Rare Disease Day –

Abilities Expo –

Rare Across America –

Global Genes RARE Patient Advocacy Summit –

NORD Rare Diseases Summit –

Rare Disease Week on Capitol Hill –

Undiagnosed Day –

Legislative Issues

The following are issues that NAF is following. Click the title of any issue to learn more.

Share Your Story

Let’s show the world the incredible people and families that are a part of the Ataxia community! Please share your story with us to add to our Member Stories page. Email us at  

Advocacy Partners

Contact Us

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

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