Durhane Wong-Rieger


DURHANE WONG-RIEGER, Ph.D. is President of Asia Pacific Alliance of Rare Disease Organizations, Treasurer of UN NGO for Rare Diseases, Chair of Patient Advocates Constituency Committee of the International Rare […]
Samuel Wiafe


Samuel Wiafe is an alumni of University of Ghana and a Clinical Psychologist in Ghana. He has received training in MPS Disorders, Fabry & Gaucher and other Metabolic Disorders from […]
Marshall Summar


Dr. Summar is well-known for his pioneering work in caring for children diagnosed with rare diseases. He is now the CEO, Uncommon Cures, LLC, a rare disease clinical trials company […]
Mike Porath


Mike Porath is the founder and CEO of The Mighty, the leading digital health community that reaches more than 20 million people a month. He discovered the importance of community […]
Carmencita Padilla


Dr. Carmencita D. Padilla is an Emeritus Professor, College of Medicine, University of the Philippines (UP) Manila. She is an international consultant on rare diseases and newborn screening. She received […]
Anne O’Donnell-Luria


Anne O’Donnell-Luria, MD, PhD, is an Assistant Professor in Pediatrics at Harvard Medical School and Institute Member at the Broad Institute of MIT and Harvard. She is the co-director of […]
Dau-Ming Niu


Professor Dau-Ming Niu currently serves as the Chairman of the Department of Pediatrics and Director of the Center for Rare Diseases Research and Treatment at Taipei Veterans General Hospital, Taiwan. […]
Maryam Matar


Dr. Maryam Matar, M.D., Ph.D. is celebrated as the most powerful scientist in the UAE. Her remarkable contributions to preventive healthcare and advancing genetic sciences in the Arab world have […]
Derralynn Hughes


Prof. Derralynn Hughes is Professor of Experimental Haematology at the University College London, Research and Development Clinical Director at the Royal Free London NHS Foundation Trust Group. She is co-clinical […]
Kevin Huang


Kevin Huang, a rare disease patient himself, graduated from Zhejiang University City College. He is the founder and president of Chinese Organization for Rare Disorders. He was also the one […]