Challenges faced by Malaysia Rare Disease communities and Recommendations are authored by
Prof Thong Meow Keong and Dr. Azlina Ahmad-Annuar.
Prof Thong Meow Keong
is a Professor of Paediatrics and Consultant Clinical Geneticist at the University of Malaya Medical Centre. He was a Fulbright scholar and an Australasian board-certified clinical geneticist. He established the first Genetics Clinic in 1995 and the Genetics & Metabolism Unit at the Department of Paediatrics, Faculty of Medicine, University of Malaya. He has published extensively on rare diseases and inherited conditions in Malaysia with nearly 90 peer-reviewed journal papers, authored 6 books and monographs and 10 book chapters including one in the Oxford Monograph in Medical Genetics and presented over 150 conference proceedings. He collaborated with global institutions and won numerous research awards. He worked with the Ministry of Health Malaysia in developing a genetic counselling module for thalassemia and involved in various educational, technical or guideline committees on inherited disorders / rare diseases. He was invited by the World Health Organization to help prepare a monograph on“Management of Birth Defects and Haemoglobin Disorders”. He is the current President of the College of Paediatrics, Academy of Medicine of Malaysia; Chair of the Clinical Genetics subspecialty, National Specialist Register,Vice-President of the Medical Genetics Society of Malaysia and Advisor to the Malaysian Rare Disorders Society. He was the Head of the Department of Paediatrics, University of Malaya from 2009-2011 and the past President of the Asia-Pacific Society of Human Genetics (2012-2015).
Dr. Azlina Ahmad Annuar
(BSc Neuroscience – University College London; PhD Neurogenetics -Imperial College London) is a senior lecturer at the Department of Biomedical Science, Faculty of Medicine, University of Malaya. Her research interests are on the neurosciences and the genetics of neurological diseases, some of which fall within the rare disease category. She runs a number of community-based activities like the annual Brain Awareness Week, and the Jeans for Genes Malaysia campaign which works closely with patient support groups to help raise awareness about genetic disorders.
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