Kuala lumpur: A total of 26 medicines for rare diseases had been registered in Malaysia as of April this year, from none before 2020, the Dewan Negara was informed today. Deputy Health Minister Datuk Hanifah Hajar Taib emphasized the Ministry of Health's (MOH) continuous efforts to enhance access to medicines and treatment for patients with rare diseases.

According to BERNAMA News Agency, the Malaysian Orphan Medicines Guideline 2020 has been a pivotal framework that outlines procedures and criteria for evaluating new medicines. Hanifah Hajar noted that adherence to these guidelines has expedited the approval of safe and effective medications. This was in response to Senator J. Isaiah's inquiry regarding the government's initiatives and latest developments in the management and treatment of rare diseases in Malaysia.

Hanifah Hajar reported that 529 types of rare diseases have been cataloged in the Malaysian Rare Disease List, with approximately 80 percent linked to genetic factors. These include lysosomal storage diseases, affecting the body's ability to break down substances, spinal muscular atrophy, impacting nerve cells and muscle function, and several rare skin disorders.

She also highlighted the ministry's increased annual funding for the diagnosis and treatment of rare diseases, rising to RM42 million this year from RM25 million previously. Treatment costs can range from RM100,000 to RM1 million per patient. Furthermore, the National Rare Disease Policy for Malaysia was formulated in 2025, and a national action plan is being finalized through collaboration among relevant ministries.

On a regional scale, Hanifah Hajar mentioned that Malaysia hosted and led the Southeast Asia Rare Disease Policy Forum in 2025, and efforts are underway to achieve an ASEAN Declaration on Rare Diseases.