Friedreich's Ataxia Research Alliance
Friedreich's Ataxia Research Alliance[edit | edit source]
The Friedreich's Ataxia Research Alliance (FARA) is a non-profit organization dedicated to advancing research and finding a cure for Friedreich's ataxia (FA), a rare, inherited neurodegenerative disease. Founded in 1998, FARA has become a leading force in the global effort to understand and treat this debilitating condition.
History[edit | edit source]
FARA was established by a group of patients, families, and scientists who recognized the need for a coordinated effort to combat Friedreich's ataxia. The organization was co-founded by Ronald J. Bartek, who has been a prominent advocate for FA research and patient support.
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Mission and Goals[edit | edit source]
FARA's mission is to marshal and focus the resources and relationships needed to cure Friedreich's ataxia 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.
Research Funding[edit | edit source]
FARA funds a wide range of research initiatives, from basic science to clinical trials. The organization supports projects that aim to understand the underlying mechanisms of FA, develop new therapeutic approaches, and improve patient care. FARA collaborates with academic institutions, biotechnology companies, and government agencies to accelerate the pace of research.
Patient Support and Advocacy[edit | edit source]
In addition to funding research, FARA provides support and resources for individuals affected by Friedreich's ataxia and their families. The organization advocates for policies that promote research and improve access to care. FARA also organizes events and conferences to foster collaboration and share knowledge among researchers, clinicians, and patients.
Key Initiatives[edit | edit source]
FARA has launched several key initiatives to advance its mission, including:
- Collaborative Clinical Research Network in FA (CCRN in FA): A network of clinical research centers dedicated to conducting clinical trials and studies in Friedreich's ataxia.
- FA Global Patient Registry: A database that collects information from individuals with FA to facilitate research and clinical trial recruitment.
- Biomarker Development: Efforts to identify and validate biomarkers that can be used to track disease progression and response to treatment.
Related Pages[edit | edit source]
External Links[edit | edit source]
- [Friedreich's Ataxia Research Alliance Official Website](https://www.curefa.org)
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