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FARAFARA Cure FA

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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About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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