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Rare Diseases and the National Policy

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Rare diseases are those which affect a small number of people and it varies from place to play.. At location, it may be a rare disease, but common in other.

The Ministry of Health and Family Welfare approves the National Rare Disease Policy 2021 recently. Prior to this, the Delhi High Court had directed the Centre to set up a Rare Diseases Committee, a Rare Diseases Fund. And asked to finalise the National Health Policy for Rare Diseases on or before 31st March, 2021.

The policy has split rare diseases in groups of three. The first Group includes Diseases which require just single treatment. The next group includes those diseases that requires long time treatment. The third group includes Diseases for which treatment is present, but are very costly and also requires permanent therapy.

People who suffer from diseases listed under Group1, will get financial assistance up to 20 lakhs under Rashtriya Arogya Nidhi. It also includes support through crowdfunding.

Unlike Group 1 and Group 2, patients with Group 3 disorders require sustainable treatment support. If that is absent, there is a risk of losing the lives of patients. The only solution in such cases will be to choose crowdfunding.

Furthermore, a dedicated National hospital-based registry of rare diseases will be developed. It makes sure to provide appropriate data and detailed definitions of such diseases, which will be available for those interested in research and development.

Nearly, 6,000-8,000 are classified as rare diseases, but less than 5% have therapies available. Example: fibrosis, muscular dystrophy, haemophilia etc. And 95% rare diseases have no approved treatment.

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