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
Advocacy events bring the Ataxia community together to push for progress. Whether you’re meeting with lawmakers, attending educational sessions, or raising awareness in your local community, these events are a chance to make your voice heard. Join us or our advocacy partners to learn, connect, and take meaningful action for a better future for people living with Ataxia.
2025 United Against Ataxia Hill Day: September 17 – Website coming soon!
International Ataxia Awareness Day: September 25 – www.ataxia.org/international-ataxia-awareness-day/
Rare on the Road Leadership Tour – Stay tuned for next year’s dates – everylifefoundation.org/rare-on-the-road/
Rare Disease Day: Week of February 28th – rarediseases.org/rare-disease-day/
Abilities Expo – www.abilities.com/expos/
Rare Across America: August 5-16th – rareadvocates.org/voter-voice
Global Genes RARE Patient Advocacy Summit: September 25-28th – globalgenes.org/event/patient-summit/
NORD Rare Diseases Summit: October 20-22nd – rarediseases.org/summit-overview/
Undiagnosed Day: April 29th – rareundiagnosed.org/april-29th-is-undiagnosed-rare-disease-day/
Our generous donors help us fund promising Ataxia research and offer support services to people with Ataxia. Your gift today will help us continue to deliver on our mission to improve the lives of persons affected by Ataxia.
Join for FREE today! Become a part of the community that is working together to find a cure. As a member you will receive access to the latest Ataxia news with our e-newsletter and Generations publication.
