There are more than 7,000 types of rare diseases, yet the interest and investment into rare diseases are often limited to a handful of more well-known diseases. For people living with rare diseases and their families, the journey from diagnosis to accessing treatment can take a huge emotional and financial toll. Ahead of the tabling of Budget 2023, we speak to Nadiah Hanim Abdul Latif, President of the Malaysian Rare Diseases Society and Prof Dr Thong Meow Keong, consultant paediatrician and clinical geneticist from UMMC on how we can do better to support the rare disease community in Malaysia and whether we’ll finally see rare diseases being on the priority list. 

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