Our Certified Patient Advocates (CPAs) are dedicated GNE Myopathy patients around the world who assist us in our mission. These Advocates are leaders in the patient community and are committed to helping us in our efforts to bring programs that enhance the quality of lives of patients and families in their respective countries.

CPAs speak many languages and are therefore able to reach out to patients and potential patients to offer support and resources. These Advocates, with our support, also help us organize and host Patients’ Days in their countries.

Reach out to one of these dedicated advocates or contact us for more information.

North America

Photograph of Amy

Amy Curran

Patient Advocacy Program Manager

Eastern Region

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Melissa Branch

Southeast Region

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Harmony Frederick

Harmony Frederick

Western Region

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Imad Kazim

New England

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Al Stork

Midwest Region

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Tara Voogel

Patient Advocacy Program Manager

Western Region

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Stephanie Wood

Patient Advocacy Program Manager

Eastern Region

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Africa

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Rose Okoma

Ivory Coast

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Asia

Sabeen Faisal

Pakistan

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Kyeong Hwa Ryu

South Korea

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Kelly Ma

Taiwan/China

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Osamu Sasaki

Japan

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Ashutosh Verma

India

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Australia

Stephen Campbell

Sydney, Australia

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Europe

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Valenee Gosine

United Kingdom – Southern Region

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Saskia Melches

Germany

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Photograph of Vaneesha and Abajee

Vaneesha Mohadawo & Abajee Dharmajee

France

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Photograph of Mona

Mona Patel

Patient Advocacy Program Manager

United Kingdom – Northern Region

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Leif Roth

Switzerland

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Yulia

Russia

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Middle East

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Roberta Cirisyan

Turkey & Greece

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Maya Davidovich Cohen

Patient Advocacy Program Manager

Israel

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Suleyman Kus

Turkey

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Guy Ratson

Israel

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Abdullah Al Shamrani

Saudi Arabia

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