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In Master Arnesh Shaw v. Union of India & Anr. Case, Delhi HC emphasized that Right to Health is an integral part of Right to Life (Article 21) and must be equally upheld for all individuals, regardless of whether they suffer from prevalent or Rare Diseases.
Key directions
- To Union of India
- Constitute National Rare Diseases Fund (NRDF) to reduce prices and increase accessibility.
- Donations for rare diseases to be added in Schedule VII of Companies Act, 2013 to enable CSR contribution.
- NRDF shall be administered by National rare disease cell consisting of one or more nodal officers in Ministry of Health and family Welfare (MoH&FW).
- Develop and operationalize centralized National Rare Disease Information Portal that includes patient registry, available treatments (within 3 month).
- Union of India direct DCGI and CDSCO to create “dedicated Fast Track approval process” for rare disease drugs and therapy (within 60 days).
- Constitute National Rare Diseases Fund (NRDF) to reduce prices and increase accessibility.
- To Pharmaceutical companies
- Ensure adequate availability of therapies and medicines in India for rare diseases, through manufacturing or imports.
- Companies importing rare disease therapies shall submit detailed plan to MoH&FW and National Rare Disease Committee within 90 days for establishing local manufacturing/distribution facilities in India.
About Rare Disease (RD)
Initiatives taken for Rare disease
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