OUR TEAM

Prof Dr. Thong Meow Keong Advisor Prof Thong is a paediatrician, clinical geneticist, academic researcher and teacher. A strong proponent of healthcare providers to care and advocate for patients with rare diseases. Dato Hatijah Binti Ayob Founder Since 1970, interned and trained in manpower, social and  welfare whilst working with a British company for 10…

VISION, MISSION & OBJECTIVES

Vision A future where all individuals living with rare disorders and their families in Malaysia experience better quality of life, through full recognition, equitable opportunity and access to support, including for health and social care. Mission Provide support to individuals and families affected with Rare Disorders. Develop strategies and programs to raise public and professional…

WHO WE ARE

WHO WE ARE? We are about RARE disorders. A rare disorder (RD) is a medical condition that affects only a few people in the population and usually has genetic origins. Malaysia defines a rare disease as one which has prevalence of 1 in 4000 births. Examples include Osteogenesis Imperfecta (brittle bones disease), Duchenne Muscular Dystrophy,…