FA Patient Registry

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

Myriam Rai, PhD
Director of Global Relations & Initiatives
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


	RESOURCES	GOVERNANCE	ADVOCACY

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 Myriam Rai, PhD Director of Global Relations & Initiatives 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