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
Join NAF and our partners at FARA in advocating for Ataxia and rare disease related policy issues during our annual United Against Ataxia Hill Day on September 17th! Advocates will have the opportunity to attend virtual meeting with members of Congress and their staffers to tell their stories and relay the importance of supporting NAF’s legislative initiatives.
Important! Your Congressional meetings will not be scheduled until you complete the training video survey.
If you encounter any problems, or if you have any questions, contact Lori Shogren at lori@ataxia.org or Emma Potter at emma.potter@curefa.org.
All meetings will be virtual and run approximately 15-30 minutes in duration. You will be assigned 2-5 meetings between 9am and 5pm ET.
Your Congressional Members need to hear from you to fully understand what Ataxia is and what legislative action is needed! Join us in raising awareness about Ataxia, research funding needed, and ways to expedite treatments.
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 Read More…
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Author: Mark Hazlin, NAF Board Member In 2021, as I logged into the virtual platform for the National Ataxia Foundation (NAF) Hill Day for the Read More…
Annual United Against Ataxia Hill Day was on September 20, 2023. At this virtual event, Ataxia advocates spoke with their Congressional Members to help them fully Read More…
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