KUALA LUMPUR, Nov 13 — The Ministry of Health (MOH) has set up a national governance committee to manage rare diseases in Malaysia.
Health Minister Dzulkefly Ahmad told Parliament that in the short term, the National Framework for Rare Disease planned to define rare diseases in the country, strengthen labs for rare diseases, and craft policies and strategies to obtain orphan drugs and products in Malaysia.
Orphan drugs are medicines meant to treat rare disorders that pharmaceutical companies have little interest in developing under normal market conditions because of the small potential market, hence requiring government assistance.
“For our long-term plan, MOH plans to set up a registry of rare diseases to collect and analyse data for the purposes of developing and monitoring patient health by evaluating clinical management programmes,” said Dzulkefly in response to Batu Gajah MP Sivakumar Varatharaju.
“MOH also encourages research and development in fields related to rare diseases and cooperation with insurance companies to cover rare disease patients.”
The national governance committee on rare diseases will comprise other stakeholders like the Women, Family and Community Development Ministry, the Social Welfare Department, and the Education Ministry.
