MOH creates National Framework for Rare Diseases

13 Nov 2019 / 21:10 H.

KUALA LUMPUR: The Ministry of Health (MOH) has set up a National Framework for Rare Diseases to create a governance committee for those suffering from such ailments in Malaysia.

Deputy Minister Dr Lee Boon Chye said the committee would advocate health education to the public, screening and diagnosis of rare diseases.

‘’In addition, it will also boost before birth diagnosis and examination of new-born babies, clinical management, reference system, data collection and research linked to rare diseases,’’ he said in a special chamber session in Parliament, today.

Dr Lee said this when answering to a question from V. Sivakumar (PH-Batu Gajah) who had asked about rare diseases in Malaysia.

In terms of the short term plans under the framework, he said it would decide on the definition of rare diseases in Malaysia, in addition to helping to firm up the governance of the rare diseases services by firming up the laboratory, drafting policies and strategies related to acquisition and access to orphan drugs and limited products in Malaysia.

In the long term, MOE aspired to create a registration base of rare diseases to collect and analyse data for developing and monitoring the health of the patients in evaluating the clinical management programmes conducted.

‘’The ministry also encourages research and development in rare diseases and co-operates with insurance companies to provide coverage the patients,’’ he added.

He said the governance committee would also be represented by numerous stakeholders related to the management of rare diseases in Malaysia such as the Women, Family and Community Development, Social Welfare Department and the Ministry of Education. - Bernama

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