In 2011, Edmund’s younger son Branden was diagnosed with Spinal Muscular Atrophy (SMA). It was difficult to find care and support for SMA in Malaysia and the standards of care were relatively poor.  A few years later, he founded We CARE Journey (www.wecarejourney.org), a not-for-profit with a...

Ms. Cynthia K. Magdaraog is currently president of the Philippine Society for Orphan Disorders, Inc. (PSOD), a non-stock, non-profit organization, established to assist persons (mostly children) afflicted with a rare disease,  to access treatment and supportive care for its members. She assumed the ...

Mr Kenneth Mah is the Vice President and co-founder of the Rare Disorders Society (Singapore) - RDSS. Together with his wife, Mrs Patricia Mah, he leads the rare disorders community in Singapore and under his leadership, RDSS has been awarded the charity status in 2015. Mr Kenneth Mah continues to...

Dr. Padilla is Professor of Pediatrics at the College of Medicine and currently Chancellor of University of the Philippines Manila (www.upm.edu.ph). Recognizing her varied contributions to the academic growth of genetics in the Philippines, she was conferred Academician of the National Academy of...

Mr. Ravdeep Singh Anand, an entrepreneur who graduated from Cyprus College, Nicosia. He set up Travel World (1998-2004) where he was responsible for marketing and operations. In 2001 he started Breakdown 365, a 24 X 7 on road assistance for cars, a helpline service catering to 200 cities across...

Hazel Gorham, PhD, Senior Director, Biosimilars Development, Scientific Affairs Dr Gorham has 29 years of experience in both academic and pharmaceutical research and pharmaceutical industry across a wide range of roles including developing the development of a number of clinical development plans...

Carolyn joined Shire ( formerly Baxalta, formely Baxter) in November 2008 and has close to 24 yrs of experience in the healthcare industry initially in Europe and for the last 14 years in Asia in both the device and Pharma /Biotech sector. Carolyn began her healthcare career in research then moved...

Terry Lai, age 27. Vice chairman of Hong Kong Mucuopolysaccharidoses & Rare Genetic Diseases Mutual aid groupA rare disease patient with Pompe DiseaseDiagnosed Pompe since age 14 with no medication until the Enzyme Replacement Therapy (i.e. ERT) starts on 2011.He graduated from Hong Kong...

John Lim is a medical graduate of the National University of Singapore (NUS), and holds Masters degrees in Public Health from NUS and in Health Policy and Management from Harvard University. He is a Specialist in Public Health Medicine, a Fellow of the Singapore Academy of Medicine, and Adjunct...

Raj has been involved in non-profit healthcare management for more than 18 years, focusing on illness specific programmes for patients and their caregivers.   He has spearheaded a number of regional efforts in building awareness and creating advocacy, empowerment and access programmes with patient...

After working as a retail pharmacist for 10 years, I joined some doctors to set up a pharmaceutical wholesale business in 2008.  We began working with Hospitals to source for Orphan drugs, Speciality drugs, Exempted product and pre-approved/Phase II &III drugs to provide patients with the best...

Teik-Lee joined Sanofi Genzyme in February 2015 and has more than 15 years of commercial experience in the pharmaceutical industry, initially in Malaysia, Singapore, Brunei and in more recent years broadened his expertise to include regions such as the Asia-Pacific and Emerging Markets.In the...

Young Joo PARK, Ph.D. obtained Ph.D. degree in Epidemiology from Seoul National University.She started her career in MSD Korea as a specialist in Epidemiology and Biostatistics. She extended her experiences to data management, medical writing, safety management, and clinical operations. Then she...

Catherine Jayasuriya is a film director and the founder and executive director of Coalition Duchenne, a non-profit focused on raising funds and awareness for Duchenne muscular dystrophy.Catherine is half Malaysian and half English, and lives with her husband and three children in California. Her...

Hans-Peter Guler, MD, Senior Vice President, Clinical Development, joined INC Research in September 2010 as Vice President, Clinical Development. He has over 20 years of experience in the clinical research industry. Prior to joining INC Research, Hans-Peter served as Chief Medical Officer/Vice...

Dr. Maria Melanie Alcausin is the Director of the Newborn Screening Reference Center and a Research Assistant Professor at the National Institutes of Health of the University of the Philippines-Manila.  She is also a Clinical Associate Professor at the Department of Pediatrics of the Philippine...