There are many individuals and NGO’s has been tirelessly supporting and voicing out needs for Malaysia Rare Disease communities for past many years. This is only a starter list, will grow as we update this page.
On social media (Facebook)
Dr Ngu Lock Hock
Consultant Clinical Geneticist & Paediatrician
Clinical Lead in Inherited Metabolic Diseases
Genetics Department, Hospital Kuala Lumpur, Malaysia
Dr Ngu Lock Hock, MBBS (Malaysia), MRCP (UK), is a Consultant Clinical Geneticist & Paediatrician and the Clinical Lead in Inherited Metabolic Diseases at the Genetics Department of Hospital Kuala Lumpur which serves as the national referral centre for inherited metabolic diseases and genetic disorders in Malaysia.
After graduating from University of Malaya Medical School in 1997, Dr Ngu received training in general paediatrics and obtained the Membership of the Royal College of Physicians (UK) in 2000. He then joined the Clinical Genetics Fellowship Programme at the Hospital Kuala Lumpur 2002. As part of his training, he has also spent one year at Nijmegen Centre for Metabolic and Mitochondrial Disorders, the Netherlands.
Dr Ngu is the medical advisor for the Malaysia Lysosomal Diseases Association, a support group for Lysosomal disorders. He has published 50 manuscripts in peer-reviewed journal in the field of genetics and inherited metabolic diseases including the Journal of Inherited metabolic Disease and Journal of Medical Genetics. He has been an invited speaker at over 100 local and international events and has presented over 50 free papers since 2003. He has been an invited reviewer for international journals such as Molecular Genetics and Metabolism and Clinical Genetics. He is a member of the Malaysia Ministry of Health’s Technical Committee on Enzyme Replacement Therapy for Lysosomal Storage Disorders and the Expert Committee on Orphan Drugs, and Asia Pacific MPS Network. He is the principal investigator at Hospital Kuala Lumpur for a number of clinical studies and is the current Chairman of Hospital Kuala Lumpur Research Review Committee.
Prof Thong Meow Keong
Professor of Paediatrics and
Consultant Clinical Geneticist
University of Malaya Medical Centre
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).
Prof Asrul Akmal Shafie BPharm
Dr. Azlina Ahmad Annuar
University College London; PhD Neurogenetics,
Imperial College London