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Director of Patient Engagement
Join a high energy, committed team of professionals dedicated to supporting the advancement of research leading to treatments to improve a quality of life for people living with Friedreich Ataxia. Position Summary: Lead FARA’s Patient Engagement programs and facilitate communications with all stakeholders (industry, academia, patient families, donors and government partners). Create and implement programs that support the research mission in promoting outreach, education and community building among Friedreich’s Ataxia families across the country.  Responsible for the ongoing development of FA Global Patient Registry, growing enrollment of the registry and working with sponsors to plan and recruit clinical research trials.  Work with FARA’


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