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
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.
International Ataxia Awareness Day – https://ataxia.org/international-ataxia-awareness-day/
Rare on the Road Leadership Tour – https://everylifefoundation.org/rare-on-the-road/
Rare Disease Day – https://rarediseases.org/rare-disease-day/
Abilities Expo – http://www.abilities.com/expos/
Rare Across America – https://rareadvocates.org/voter-voice
Global Genes RARE Patient Advocacy Summit – https://globalgenes.org/event/patient-summit/
NORD Rare Diseases Summit – https://rarediseases.org/summit-overview/
Rare Disease Week on Capitol Hill – https://rareadvocates.org/rdw/
Undiagnosed Day – https://rareundiagnosed.org/april-29th-is-undiagnosed-rare-disease-day/
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.
NAF supports the following legislative efforts:
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. Submit the information using the form below.