National Policy for Rare Diseases 2021

About National Policy for Rare Diseases 2021: 

 

• It aims to lower the high cost of treatment for rare diseases with increased focus on indigenous research.
• It offers financial support for one-time treatment of up to Rs. 20 lakh, introduces a crowd funding mechanism, creates a registry of rare diseases and provides for early detection.
• The rare diseases have been identified and categorized into 3 groups namely
  • Group 1:  Disorders amenable to one-time curative treatment.
  • Group-2: Diseases requiring long term/lifelong treatment having relatively lower cost of treatment and benefit has been documented in literature and annual or more frequent surveillance is required.
  • Group 3:- Diseases for which definitive treatment is available but challenges are to make optimal patient selection for benefit, very high cost and lifelong therapy.
• In order to receive financial assistance for treatment of rare disease, the patient of the nearby area may approach the nearest Centre of Excellence to get him assessed and avail the benefits.
• Eight (08) Centres of Excellence (CoEs) have been identified for diagnosis, prevention and treatment of rare diseases.
• Centres of Excellence: The Centres of Excellence would be provided a one-time grant to a maximum of Rs. 5 crore each for infrastructure development for screening, tests, treatment.

 

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Q1) What is rare disease?

A rare disease, also known as an orphan disease, is a medical condition that affects a small number of individuals in the population. The exact definition of a rare disease may vary by country or region, but generally, a disease is considered rare if it affects fewer than a specific number of people per a given population.

Source: Waiver for rare disease drugs brings little relief: Pharma sector