SEPANG: Malaysia will lead efforts for a South-East Asia Declaration and Action Plan on Rare Diseases to improve diagnosis, treatment and support for those affected, says the Health Minister.
Datuk Seri Dr Dzulkefly Ahmad said as Asean Chair this year and host of the Asean Health Ministers Meeting in 2026, Malaysia will be focused on driving this shared agenda through solidarity, inclusivity and sustainability.
He said the initiative builds on the World Health Assembly resolution earlier this year that recognised rare diseases as a global health priority for equity and inclusion.
“Across South-East Asia, more than 45 million people may be living with a rare disease, yet many still face delayed diagnosis, limited access to treatment and a lack of coordinated support.
“No country can face this challenge alone. Through solidarity among Asean member states, we can improve diagnosis and treatment, and build data-sharing systems that ensure collective progress,” he said at the South-East Asia Rare Disease Policy Forum here yesterday.
Dr Dzulkefly said the regional roadmap Malaysia was championing would reflect the diverse realities of each Asean member state while ensuring efforts were sustainable through long-term financing and public-private partnerships.
“It’s easy to start something, but it must be sustainable. We must think of the long-term, from funding to partnerships, so that our efforts continue beyond our chairmanship,” he added.
Dr Dzulkefly said the roadmap will be aligned with the World Health Organization (WHO) resolution and developed in close partnership with global stakeholders including Rare Diseases International (RDI) and the Asia Pacific Alliance of Rare Disease Organisations (Apardo).
“Ultimately, our leadership is about bringing people together, facilitating dialogue and mobilising collective action. This is a call for action,” he said.
The minister said the impact of rare diseases extends far beyond patients alone.
“While rare diseases affect about 300 million people worldwide, the true number is closer to 1.2 billion when we consider the families who go through the journey alongside them,” he said.
Egypt’s Assistant Minister of Health for Projects and Public Health Initiatives, Prof Dr Mohamed Hassani, commended Malaysia’s active role in advancing the global rare disease agenda.
“Rare disease management should not be seen as a cost, but as a moral responsibility. Each country should build on small successes and adapt to its local context,” he said.
Dr Soraya Bekkali, senior vice- president at Alexion, AstraZeneca, said rare diseases were now recognised globally as both a public health and economic issue, noting that investing in health can yield long-term economic benefits.
She said every dollar invested in public health resulted in two to four times economic growth.
“Healthy populations support healthy economies. The first step for Asean countries is to strengthen data collection and disease registries, as data brings visibility to patients who were once unseen,” she added.
Rare Diseases International CEO Alexandra Heumber Perry also praised Malaysia’s inclusive approach in developing its National Policy for Rare Diseases, which was pre-launched in August.
“Malaysia’s model shows how inclusion can drive real impact. Even without major funding, political leadership paired with community engagement can transform lives,” she said.
