By DayakDaily Team
KUCHING, July 28: Malaysia has identified and listed 529 rare diseases, about 80 per cent of which are linked to genetic causes, as the government intensifies efforts to improve diagnosis, treatment and access to specialised medicines.
According to Bernama, Deputy Health Minister Datuk Hanifah Hajar Taib said the Malaysian Rare Disease List includes conditions such as Lysosomal Storage Disease, Spinal Muscular Atrophy (SMA) and several rare skin disorders.
She said the Ministry of Health (MOH) has registered 26 orphan medicines for rare diseases as of April this year, a significant increase from having no such registered products before 2020.
“The ministry developed the Malaysian Orphan Medicines Guideline 2020, which outlines the procedures and evaluation criteria for new medicines.
“Compliance with these guidelines helps expedite the approval of medicines that are safe and effective,” she said during a question-and-answer session in the Dewan Negara today.
She was responding to a question from Senator J. Isaiah on the government’s initiatives and developments in the management and treatment of rare diseases in Malaysia.
Hanifah said the government has also increased its annual allocation for the diagnosis and treatment of rare diseases to RM42 million this year, up from RM25 million since 2024.
She noted that treatment costs for a single patient can range from RM100,000 to RM1 million, depending on the condition and medication required.
In addition, she said the National Policy on Rare Diseases in Malaysia was introduced in 2025, while a national action plan is currently being finalised through collaboration among various ministries.
“At the regional level, Malaysia hosted and chaired the Southeast Asia Rare Disease Policy Forum 2025 and is working towards developing an ASEAN declaration on rare diseases to strengthen regional cooperation in addressing the issue,” she said. — DayakDaily
