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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.

 
 
 



The National Ataxia Foundation (NAF) and FARA will be holding their second Hill day on Thursday, September 10, 2020, to raise awareness about ataxia and support legislation that directly impacts our communities. In addition to the scheduled meetings NAF and FARA will have with US Senators, we are asking members of both communities to flood the hill with correspondences (calls, emails, social media posts) that day! Here is how you can take part!

An advocacy training webinar was held on September 2. Please click the button below to view a recording of that event.

View Webinar Video

View/Download Slides (PDF)

A quick highlight of the issues we are currently following are:

  • National Ataxia Awareness Day Resolution: International Ataxia Awareness Day is celebrated on September 25. NAF and FARA are asking for a resolution to also recognize that date as National Ataxia Awareness Day. Designating September 25 as National Ataxia Awareness Day will elevate the awareness needed to improve the lives of the persons and families affected by Ataxia and can help accelerate development and access to effective treatments.
    • A Republican Co-Sponsor is Needed for our Resolution! If you have a Republican Senator in your state please Contact Them about Co-Sponsoring this Resolution. Please contact Brigid Brennan at brigid.brennan@curefa.org if you have any questions or potential Republican candidates.
  • Increased funding for the NIH and FDA: Elected officials will be working on appropriations for our government partners at the NIH and FDA in September. These agencies are vital to our drug development program and need the resources to appropriately manage the demands of COVID in addition to all the other important research programs they review.
  • Community Home Health and Telehealth Policies: In the early weeks and months of the COVID-19 public health emergency, Congress and the Administration took important steps to ensure patients have access to essential care while the nation grappled with controlling the spread of the virus. Specific time-limited regulatory flexibilities have removed significant barriers to care and improved access for the 30 million Americans living with a rare disease or condition including Ataxia. However, these flexibilities are at risk of going away when the public health emergency ends. We urge policymakers to recognize how these flexibilities have benefited members of the rare disease community and consider which policies should be kept in place after the public health emergency ends.
  • Creating Hope Reauthorization Act: This bill will permanently authorize the Pediatric Priority Review Voucher (PRV) program which will further the opportunity to spur innovation in rare and neglected diseases that disproportionately impact children.
  • Rare Disease Congressional Caucus: The Rare Disease Congressional Caucus helps bring public and Congressional awareness to the unique needs of the rare disease community (including patients, physicians, scientists, and industry), and creates opportunities to address roadblocks to the development of and access to crucial treatments. The Caucus gives a permanent voice to the rare disease community on Capitol Hill. Find Out if your Representatives are members of the Rare Disease Caucus. Thank your Representatives that are members and Invite those that are not to join.

 

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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