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Monthly Update - January 2023

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Dear friends,

In FARA's strategic plan, one of the core pillars is to share knowledge and know-how within the research and patient/caregiver communities. Some of the resources previously developed by FARA to help educate the FA community about clinical research include a series of self-paced Gene Therapy Learning Modules as well as a Clinical Trials Guide for Participants.

To add to this growing library of education materials, FARA recently created a Rare Disease Medication Frequently Asked Questions (FAQ) document. As programs advance through the Friedreich's Ataxia Treatment Pipeline, FARA has been researching how other rare disease patients access their approved medications. During this research, we learned some new vocabulary along with processes and programs. We outline some of our learnings in this FAQs document. We hope you find it useful. As we continue to identify education opportunities and resources, we are committed to sharing that information with the FA community.

Sincerely,
Jen

Jennifer Farmer,
FARA Chief Executive Officer

Other topics in our January Monthly update:
  • Pharma News
  • Open & Enrolling Studies
  • Minutes of Science
  • Recently Funded FARA Grants
  • Advocacy in Action!
  • Save the Dates - rideATAXIA 2023
More...

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