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Advocacy

 

FARA advocates on behalf of and in front of its stakeholders and partners—the FA patient community, academic investigators, industry partners and government agencies such as the NIH and the FDA.

 

 

Alone and in collaboration with other organizations, FARA communicates with government agencies at the state and federal level in pursuit of policies and decisions intended to advance therapeutic development.

FARA supports the following initiatives:

  • Awareness Campaigns
    • Rare Disease Day - Last Day in February
    • Friedreich's Ataxia Awareness Day - Third Saturday in May
    • International Ataxia Awareness Day - September 25
  • NIH & FDA Budgets
  • Newborn Screening
  • Patient-Focused Drug Development
  • 21st  Century Cures Initiative
  • Prescription Drug User Fee Act (PDUFA) VI
  • Full implementation of FDASIA provisions

 

FARA has been working with Research!America to create a fact sheet on FA.
It is a great document that explains FA and the value of research which can be attached to an email correspondence or left behind after a visit to an elected official.   View or download the PDF
 

Contact info@cureFA.org to find out how you can get involved.

 

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