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Governance


The FA Global Patient Registry is maintained by international patient advocacy organizations, clinicians, and members of the FA community through a Governance Board.

Please direct any questions to the registry coordinators at FAGPR@curefa.org

Governance Board


Marianne Hakim
President and co-founder of FALA - Friedreich Ataxia Lebanese Association as the first NGO in Lebanon and the region, living with FA for 17 years.

Amalia Maranhao
Chairwoman of Abahe - Brazilian Association of Hereditary Ataxias
Head of the social movement Ataxia de Friedreich Brasil
Mother of an FA patient
Journalist

Bart-Jan Schuman
Friedreich Ataxie Förderverein e.V.
Father of an FA patient
Germany

Caterina Mariotti, MD
Neurologist
IRCCS-Foundation Neurological Institute Carlo Besta
Milan -Italy

Prof. Dr. Kathrin Reetz, MD
Department of Neurology, RWTH Aachen University
Aachen, Germany

Dale Gardner
FA Patient
Affiliated with Ataxia UK

Prof. Barry Hunt
Ataxia UK

Susan Walther, MS, CGC
Director of Patient Engagement Friedreich’s Ataxia Research Alliance
Data Access Request
 
Research and Industry Partners:
 
To request access to the Patient Registry data, please complete this Request Form, and return it to FAGPR@curefa.org

The FAGPR has been collaboratively built on Pulse Infoframe's healthie™ platform.