Kuala Lumpur, 20 December 2019 – The Institute for Democracy and Economic Affairs (IDEAS) has launched a Whitepaper on Rare Disease Policy in Malaysia, by Professor Dr Thong Meow Keong and Dr Azlina Ahmad Annuar from University Malaya. This Whitepaper is a product of concerted consultations with relevant stakeholders of rare disease including patient advocacy groups, policymakers and industry. The Whitepaper presents a comprehensive policy framework for the consideration of the government.

Some of the recommendations of the Whitepaper are outlined below;

• Establish a clear definition of Rare Disease in Malaysia
• Increase the capacity of medical expertise in the field of rare diseases such as clinical geneticists and genetic counsellors
• Establish regional centres to improve access to treatment in different parts of the country and a centre for excellence for the purpose of training, education and research in the field of rare diseases
• Improve access to highly-priced treatments by reforming the current drug approval process and exploring sustainable funding models
• Improve the quality and availability of supportive care for rare diseases, such as rehabilitative services, medical social work, respite care and counselling services

This Whitepaper builds on IDEAS previous publications “National Policy on Rare Diseases Living with Dignity: In Search of Solutions for Rare Disease” by Professor Dr Thong Meow Keong and Dr Azlina Ahmad Annuar and “Improving Access to Orphan Drugs in Malaysia” by Dr Asrul Akmal Shafie. The management of rare diseases is a complex issue, due to fiscal constraints and diversity of clinical needs. This Whitepaper is an attempt to provide some creative solutions to sustainably improve the welfare of individuals with rare diseases in Malaysia, for the consideration of the government and relevant stakeholders.

The Whitepaper can be downloaded at ()

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