Malaysia Proposes ASEAN Declaration On Rare Diseases To Speed Up Diagnosis, Access To Treatment - Dzulkefly

PUTRAJAYA,  April 20 (Bernama) -- Malaysia will step up regional cooperation to address rare diseases, including efforts to establish an ASEAN declaration and a shared database to speed up diagnosis and improve access to treatment.

Health Minister Datuk Seri Dzulkefly Ahmad said the initiative will be tabled at the ASEAN Health Ministers Meeting through a proposed ASEAN Declaration on Rare Diseases, aimed at coordinating joint action among member states.

He said such collaboration is crucial given the high costs associated with treating rare diseases, particularly for specialised medicines and medical equipment.

“This initiative allows ASEAN countries to collaborate on procurement of medicines and costly medical equipment, ensuring more efficient and equitable access to treatment for patients,” he said at a press conference after launching the findings of the National Health and Morbidity Survey (NHMS) 2025: Health of the Elderly, here today.

Dzulkefly added that Malaysia will also develop a rare disease registry database to facilitate data sharing with ASEAN partners and the international community, helping to accelerate diagnosis.

“Based on experience, diagnosing some rare diseases can take up to 10 years, delaying appropriate treatment. With a shared database, diagnosis timelines can be shortened and treatment outcomes improved,” he said.

He also highlighted the need to support caregivers, noting that the burden of care often extends beyond patients to their families.

“Support initiatives, including strengthening care systems and providing moral support, will continue to be enhanced as part of a comprehensive approach,” he said.

On Feb 4, Dzulkefly launched the National Policy on Rare Diseases to strengthen Malaysia’s healthcare ecosystem in managing such conditions in a more structured and sustainable manner.

He said that about 12,000 patients, covering nearly 500 types of rare diseases, are currently receiving treatment at government hospitals nationwide.

-- BERNAMA