ASEAN Action Plan To Address Rare Diseases Among Malaysia's Focus In AHMM 2026

PUTRAJAYA, Nov 7 (Bernama) -- The ASEAN Health Ministers Meeting (AHMM) 2026, which will be chaired by Malaysia next August, is expected to be a crucial platform for formulating a regional action plan concerning rare diseases in the region, said Health Minister Datuk Seri Dr Dzulkefly Ahmad.

He said that as the ASEAN Chair in 2025 and host of AHMM 2026, Malaysia intends to strengthen member states' commitment to forming a roadmap that will serve as the basis for the ASEAN Declaration and Action Plan on rare diseases.

“What is needed is not just commitment, but a blueprint, which is a comprehensive roadmap. Malaysia’s chairmanship of AHMM 2026 will allow us to present a more robust health agenda, including for rare diseases,” he said.

He spoke to the media after officiating the Southeast Asia Rare Disease Policy Forum: Advancing Regional Collaboration to Improve the Lives of People with Rare Conditions in ASEAN Region here today.

Dr Dzulkefly said the effort is in line with the WHO Global Action Plan for rare diseases, which is a 10-year commitment to raise awareness, strengthen diagnostics, and expand access to treatment for patients.

He added that Malaysia has drafted a National Rare Disease Policy which will be used as the main framework in the formation of the regional action plan.

“Our main goal is to create awareness and commonality among ASEAN member states to mainstream the issue of rare diseases.

“The three principles we emphasise are inclusivity, solidarity, and sustainability—ensuring that policy and implementation involve all parties, are mutually supportive, and are sustainable in terms of resources and funding,” he said.

According to him, today’s forum is a starting point to mobilise discussions and identify ‘low-hanging fruits’ in areas such as diagnostics, treatment, the development of patient databases (registry), and long-term funding for rare disease treatment.

“For every patient, there is a family bearing a significant burden... emotionally, financially, and socially. That is why we must have a clear and effective policy and management structure,” he added.

Dr Dzulkefly estimated that there are around 12,000 rare disease patients receiving treatment at the Kuala Lumpur Hospital and the Penang Hospital, with the actual number expected to be higher.

He also clarified that the definition of a rare disease as one that affects fewer than one individual in every 4,000 people, is typically chronic, degenerative, and can be life-threatening.

“Globally, it is estimated that there are between 6,000 to 8,000 types of rare diseases, but in Malaysia, we have identified about 492 types so far,” he said.

Ahead of AHMM 2026, scheduled for August next year, Dr Dzulkefly said the Ministry of Health is actively holding preliminary meetings and consultation sessions with regional experts to finalise the action plan.

“All these efforts are a work in progress. I am confident that by AHMM 2026, a comprehensive ASEAN action plan on rare diseases can be presented to gain the support of all 11 member states,” he said.

-- BERNAMA