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Rare Disease Week 2018

RareDiseaseWeek2018FARA Staff and Ambassadors had a significant presence in Washington DC during Rare Disease week. The week kicked off with a showing of “The Ataxian” to over 230 people! The team then joined advocates from the National Organization for Rare Disorders in speaking to legislators from their home states & advocated for them to: join the Rare Disease Caucus to raise public awareness about the unique needs of the rare disease community; help reduce barriers to genetic testing & improve the time to diagnosis; support the repurposing of FDA approved drugs for additional diseases to help save more lives & reduce drug development costs; and increase NIH & FDA funding. Our congress people are listening and do care! Some joined the Rare Disease Caucus & the FA community got a shout out on a legislator’s FB live feed! We learned that: rare disorders are “above” politics; holding ourselves & our legislators accountable will positively impact the process; legislators want to hear directly from patients, and our voices will be heard if we are clear & concise about what we need. Great Job Everyone! 

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