Pune, April 5, 2021: While the Central Government recently announced the National Policy for Rare Diseases, 2021, it has been observed that the policy has failed to define rare diseases itself. The NGOs working in the field have now questioned what is the use of this policy if it fails to define what rare diseases are.
NGOs like the Organisation of Rare Disease India pointed out that an original policy formed to address the rare diseases back in 2017 was actually good. It was not implemented, and instead, the government released a new policy draft in 2018. While the NGOs and experts have welcomed the policy in consideration of the fact that the government has at least acknowledged rare diseases, they have also called the policy pretty useless.
As the definition of rare diseases is missing, the experts have also expressed doubt as to how many patients suffering from rare diseases and their families are actually going to be benefitted from the policy.
