Malaysia will strengthen regional cooperation to address rare diseases, including pushing for the formulation of an ASEAN declaration and the establishment of a dedicated database to speed up diagnosis and enhance patients' access to treatment.
Health Minister Datuk Seri Zulkifli Ahmad pointed out that this initiative will be presented at the ASEAN Health Ministers Meeting via the proposed ASEAN Rare Disease Declaration, as a move to coordinate joint actions among member countries.
He said regional cooperation is crucial as the cost of treatment for rare diseases is high, especially for drugs and specialized medical equipment.
"This initiative will enable ASEAN countries to cooperate in the procurement of expensive medicines and medical devices, thereby ensuring patients can receive more effective treatment."
He said this at a press conference after the launch of the "2025 National Health and Morbidity Survey Report: Elderly Health".
Zulkifli mentioned that Malaysia will also establish a rare disease database to collect information and share it with ASEAN countries and international partners, thereby speeding up the diagnostic process.
He said that, based on past experience, the diagnosis of some rare diseases may take up to 10 years, resulting in patients experiencing delays in receiving appropriate treatment.
"Through the establishment of a database and information sharing, diagnostic time can be shortened, increasing the opportunity for more effective treatment."
At the same time, he said that the government is also concerned about the wellbeing of caregivers, as the burden of care falls not only on patients but also their families.
He said that caregiver support measures include the provision of mental health support and strengthening of support systems and will continue to be enhanced as part of the holistic management of rare diseases.
On February 4 this year, Zulkifli launched the National Rare Disease Policy to strengthen the national healthcare system in order to address related diseases in a more systematic and sustainable manner.
He said that currently, about 12,000 patients in the country are receiving treatment at government hospitals, involving nearly 500 types of rare diseases.