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
Click on the title of any initiative to learn more.
The National Ataxia Foundation urges the FDA to accelerate approval of treatments for rare diseases like spinocerebellar ataxia (SCA), which affects about 15,000 Americans and has no approved therapies. SCA is a progressive, inherited disorder that causes severe physical and emotional challenges, often impacting multiple generations in the same family. Sign the petition to show your support
NAF and FARA jointly advocate for a Senate Resolution recognizing September 25 as “National Ataxia Awareness Day.” Designating a National Ataxia Awareness Day highlights the impact of ataxia on individuals and their families within the United States and helps accelerate funding, development, and access to effective treatments. This designation occurs yearly. Prior co-sponsors for the resolution: Senator Cindy Hyde-Smith (R-MS) (2024, 2023, 2022, 2021, 2020); Senator Debbi Stabenow (D-MI) (2024, 2023,2022); Senator Shelley Moore Capito (R-WV) (2024, 2023, 2022); Senator Chris Murphy (D-CT) (2024, 2023, 2021); Senator Elizabeth Warren (D-MA) (2020). 2024 National Ataxia Awareness Day Senate Resolution (S.Res. 794)
Hereditary Ataxia has been added as an eligible condition under the Peer Review Medical Research Program (PRMRP), a category of the CDMRP, which will allow Hereditary Ataxia researchers access to a new funding opportunity. This year our goal is to secure continued funding to include all Hereditary Ataxias in the CDMRP. The PRMRP program announcements and submission instructions are located here.
The Hub was established to promote collaboration within FDA, focusing on development of medical products for rare diseases, especially those diseases for which there is a lack of knowledge, natural history, or there are high unmet needs.
A bipartisan Congressional Caucus that was formed to raise public awareness of rare diseases, as well as awareness within Congress.
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.
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