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RARE DISEASE POLICY

RARE DISEASE POLICY

Context:

National Policy for Rare Diseases, 2021 (the Policy) has been completed and put in public domain.

Aim of the Policy:

  • The Policy targets bringing down the rate and pervasiveness of rare diseases based on comprehensive preventive strategy including awareness generation, premarital,  pre-conception and post-conception screening, post-marital, and counselling programmes to prevent births of children with rare diseases, competing health care priorities, allow access to affordable health care to patients of rare diseases.

Website:

  • The Policy can be accessed at website- https://main.mohfw.gov.in/documents/policy.        

Some of the Initiatives for treatment support for patients of rare diseases under the Policy are as follows: 

  1. Monetary help up to Rs. 20 lakhs under the Umbrella Scheme of Rashtriya Arogaya Nidhi will be given by the Central Government to treatment of those rare diseases that require a one-time treatment (diseases listed under Group 1). Recipients for such monetary help would not be restricted to BPL families, however stretched out to about 40% of the population, who are qualified according to standards of Pradhan Mantri Jan Arogya Yojana, for their treatment in Government tertiary clinics as it were.
  2. State Governments can consider supporting patients of such rare diseases that can be dealt with extraordinary eating regimens or hormonal enhancements or other moderately low-cost interventions (Diseases listed under Group 2).
  3. Keeping in view the resource constraints, and a convincing need to focus on the accessible assets to get most extreme wellbeing gains for the community/population,  the Government will try to make an other financing component through setting up a digital platform for voluntary individual and corporate donors to add to the treatment cost of patients of rare diseases.

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