National Rare Disease Policy urgently needed - senator

 

There is an urgent need to formulate a National Rare Disease Policy to ensure that information, diagnosis and treatment of those with rare diseases are more strategic and being developed with patients as its guide, said Senator Ras Adiba Radzi.

In conjunction with Rare Disease Day observed today, Ras Adiba (above) in a statement said this is crucial as the number of medications available for rare diseases is on the rise and increasing numbers of patient groups will advocate for access to these new drugs and treatments.

“All parties should work side by side on the well-being of the rare disease society in efforts to, among others, establish mandatory reporting. Accurate data will inform resource allocation for diagnosis, treatment, prevention, rehabilitation and public education programmes towards rare diseases.

“Apart from that, rare diseases legislation is urgently needed to protect the rights and lives of babies, children, and persons with rare diseases. This can be benchmarked from the United States' law on rare diseases (Rare Disease Act 2002),” she said.

Ras Adiba, who is also OKU Sentral president, also encouraged local research on rare diseases and on the development of orphan drugs as a strategic biotechnological industry in Malaysia that goes in line with Malaysia Biotechnology Policy 2.0.

She also suggested increasing the number of genetic counsellors in the country to enable genetic counselling to be provided to assist the parents in family planning and future prenatal diagnosis.

- Bernama