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Rare disease patients seek inclusion in BJP's manifesto for funding

Rare disease patients seek inclusion in BJP's manifesto for funding
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National policy for rare diseases notified; no financial help for diseases that need costly, lifelong treatment | India News

NEW DELHI: The National Policy for Rare Diseases 2021 (NPRD) was notified on March 31. The policy provides financial support of up to Rs 20 lakh, under Rashtriya Arogya Nidhi, for the treatment of rare diseases (RD) listed under group 1 (amenable to one time treatment- either hematopoietic stem cell transplant or organ transplant). Beneficiaries for such financial assistance would not be limited to BPL families, but extended to about 40% of the population, who are eligible as per Pradhan Mantri Jan Arogya Yojana, for their treatment in government tertiary hospitals only.
However, the NPRD does not provide any financial support for patients of Group 3 diseases, which have a definite treatment but is life-long and expensive. It is estimated that for a child weighing 10 kg, the annual cost of treatment for some rare diseases may vary from Rs 10 lakh to more than Rs 1 crore per year with treatment being lifelong and drug dose and cost increasing with age and weight. For such pati ....

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