The Ministry of Health recently unveiled the long-awaited National Rare Disease Policy, which is aimed at improving access to care for people living with rare diseases at every point in their lives. How does it live up to expectations? What are the gaps that remain? And how can the upcoming Budget 2026 play a part in ensuring that the policy is turned into action? We speak to Nadiah Hanim Abdul Latif, President of the Malaysia Rare Disorders Society, and Prof Dr Thong Meow Keong, a consultant paediatrician and clinical geneticist, to explore these questions.

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