A global, cross-sector approach
to overcoming the barriers to diagnosis

The Global Commission Co-Chairs

Alaa Hamed

Global Head of Medical Affairs Rare Diseases, Sanofi
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Yann Le Cam

Founder & Past-CEO, EURORDIS – Rare Diseases Europe
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Wolfram Nothaft

Chief Medical Officer, Takeda
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The Global Commission Members

The Global Commission is a multidisciplinary group of rare disease advocates, researchers, physicians, and innovators from across the globe. Please see below for member biographies.

RESEARCH HOSPITALS

Moeen AlSayed

Professor of Genetics, College of Medicine, Alfaisal University & Consultant, Dept. of Medical Genomics, King Faisal Specialist Hospital
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CLINICAL GENETICIST/PATIENT ADVOCATE

Gareth Baynam

Medical Director, Rare Care Center, Perth Children’s Hospital & Chair, Interdisciplinary Committee, International Rare Diseases Research Consortium
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LEADING ACADEMIC/RESEARCH INSTITUTIONS

Kym Boycott

Professor of Pediatrics, University of Ottawa & Chair, Dept. of Genetics, Children’s Hospital of Eastern Ontario
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PATIENT ADVOCACY GROUPS

Pamela K. Gavin

CEO, National Organization for Rare Disorders
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RESEARCH HOSPITALS

Roberto Giugliani

Professor, Department of Genetics, Federal University of Rio Grande do Sul
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PATIENT ADVOCACY GROUPS

Kevin Huang

Founder and President, Chinese Organization for Rare Disorders
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RESEARCH HOSPITALS

Derralynn Hughes

Professor of Experimental Haematology, University College London & Clinical Director of Research and Innovation, Royal Free London
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PATIENT ADVOCACY GROUPS

Maryam Matar

Founder & Chairperson, UAE Genetic Diseases Association
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RESEARCH HOSPITALS

Dau-Ming Niu

Chairman, Dept. of Pediatrics and Director, Medical Genetics Center, Taipei Veterans General Hospital
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LEADING ACADEMIC/RESEARCH INSTITUTIONS

Anne O’Donnell-Luria

Assistant Professor in Pediatrics, Harvard Medical School & Co-Director, Center for Mendelian Genomics, Broad Institute
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RESEARCH HOSPITALS

Carmencita Padilla

Emeritus Professor, College of Medicine, University of the Philippines, Manila
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PATIENT ADVOCACY GROUPS

Mike Porath

Founder and CEO, The Mighty & Board Member, Dup15q Alliance
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RESEARCH HOSPITALS

Marshall Summar

CEO, Uncommon Cures, LLC
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LEADING ACADEMIC/RESEARCH INSTITUTIONS

Samuel Wiafe

Executive Director, Rare Disease Ghana Initiative & Clinical Psychologist, Ghana Health Service
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RESEARCH HOSPITALS

Durhane Wong-Rieger

Chair, Rare Diseases International & President and CEO, Canadian Organization for Rare Disorders
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Get in Touch

To advance the field, we believe it is critical to learn from peers about how they are making major strides in diagnosis for rare disease.
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The Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease is an association composed of a diverse group of organizations and individuals committed to shortening the time for an accurate diagnosis for all children with rare diseases. The views expressed herein are solely those of the Commission and do not represent any individual, co-chair, or member organization’s views or opinions.