Dzulkefly unveils National Policy for Rare Diseases as 12,000 Malaysians battle nearly 500 conditions

KUALA LUMPUR, Feb 4 — More than 12,000 patients in Malaysia are currently receiving treatment for rare diseases at government hospitals, involving almost 500 different types of conditions, Health Minister Datuk Seri Dr Dzulkefly Ahmad said.

He said the true measure of a healthcare system’s strength and capability was not how well it protected the strongest, but how firmly it upheld the rights of the weakest and most marginalised. 

“In South-east Asia alone, it is estimated that more than 45 million people are living with rare diseases. 

“In Malaysia, more than 12,000 patients, involving nearly 500 types of rare diseases, are currently receiving treatment at government hospitals,” he said in his speech during the launch of the National Policy for Rare Diseases here today.

At the global level, Dzulkefly said that there are nearly 8,000 known rare diseases, but only about 500 have specific treatments available. 

He then expressed his appreciation to the state governments for approving an additional RM5 million allocations for rare diseases, while stressing that he would continue to advocate for increased funding throughout his tenure.

“However, I will continue to fight for more funding, God willing, throughout my tenure. Support for rare diseases should not come solely from the consolidated fund or taxpayers’ money. We must also draw on philanthropic sources. 

“There are individuals and organisations with substantial resources who are willing to come forward to help, and we must harness this collective strength and make meaningful use of the wealth entrusted to them,” he added.

He then went on to say that the policy for rare diseases is anchored on three key pillars which are strengthening clinical governance for rare diseases, improving early and accurate diagnosis, as well as expanding access to treatment, including specialised medicines and nutritional support. 

He said the third pillar adopts a comprehensive approach that mobilises all national stakeholders, not only the federal and state governments, but society as a whole.

“This is a whole-of-nation approach. The Health Ministry cannot address this issue alone. 

“It requires cross-ministerial synergy, including education, public awareness, health literacy, social welfare, research, as well as close collaboration with clinical experts and industry,” he said.

He also added that continuity of care from hospitals to the community must be strengthened to ensure patients receive sustained and uninterrupted treatment.