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FARA's Mission and Organization

The Friedreich’s Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich’s ataxia.

FARA's Mission is to marshal and focus the resources and relationships needed to cure FA by raising funds for research, promoting public awareness, and aligning scientists, patients, clinicians, government agencies, pharmaceutical companies and other organizations dedicated to curing FA and related diseases.

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FARA’s strategic priorities and activities are described in the following four essential pillars:

  • Attracting & Facilitating Collaboration in the Community: FARA assembles all stakeholders researchers, physicians, patient families, industry and government partners - to share insights, new research and build partnerships that unite us as one well-aligned and stronger FA community.
  • Deploying Financial Resources: FARA deploys financial resources through a competitive, peer reviewed research grant program as well as FARA directed research.
  • Creating Domain Resources: FARA builds resources that help advance all therapies in the field. Examples of domain resources include the FA Global Patient Registry, the FA-Integrated Clinical Database, and bio and cell repositories.
  • Sharing Knowledge & Know-How: FARA believes that sharing the knowledge from our grant program, research conferences, academic and industry partners, and patient families optimizes our pace and enables the efficient use of resources.
FARA believes these strategic focus areas are the cornerstones of our work. They provide the tools, the knowledge and the collaborative relationships that advance therapeutic candidates in the treatment pipeline.

FARA was founded in September 1998 by a group of patient families and three of the world’s leading FA scientists — Drs. Rob Wilson, Bronya Keats, and Massimo Pandolfo. It was staffed and managed as an all volunteer organization until late 2005. FARA's Leadership and numerous patient families and friends have raised critical funds over the years to support FA research. Thanks to the brilliant and committed efforts of many FA scientists, we now understand the cause of FA and specific mechanisms leading to damage in FA patients. These understandings allow for more targeted approaches to treatment which are currently being developed for clinical trials.

FARA’s policies and disclosures serve to present FARA’s best practices in our relationships with key stakeholders including donors and the community we serve.

+ Donor Bill of Rights
+ Donor Privacy Policy
+ Corporate Relations Policy
+ State Nonprofit Disclosures
Incident Report form   (Fillable PDF Form)

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FARA has received a Four Star rating from Charity Navigator
for 11 consecutive years!



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