Draft National Policy for Rare Diseases is placed by the Health Ministry on its website.

News

Financial assistance to patients is provided by this scheme who are living below the poverty line, who suffers life-threatening diseases in the form of a ‘one-time grant.’

Ministry of Health and Family Welfare has finalized and placed the Draft National Policy for Rare Diseases on its official website. The announcement was done by the Minister of State (Health and Family Welfare), Shri Ashwini Kumar Choubey.

Highlights:
♦ A rare disease component has been included in the draft. It was made effective from 1 January 2019.
♦ Under the Umbrella Scheme of Rashtriya Arogya Nidhi, the Ministry has included one-time financial assistance up to Rs.15 lakh to patients belonging to families living below the threshold poverty line for treatment of specified Rare Diseases amenable to one-time treatment in Government hospitals.  
♦ The financial assistance covers disorders amenable to treatment with Hematopoietic Stem Cell Transplantation (HSCT), including such Lysosomal Storage Disorders (LSDs) for which Enzyme Replacement Therapy (ERT) is presently not available and severe form of Mucopolysaccharidosis (MPS) type I within first two years of age.

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