National Policy for Rare Diseases 2021

About National Policy for Rare Disease (NPRD):

• The Ministry of Health and Family Welfare, Government of India, has launched the National Policy for Rare Diseases (NPRD) in March 2021, for the management of patients havingrare diseases, which is directed towards prevention, early detection, and treatment of such diseases. 
• The policy has provision of free treatment facilities for persons suffering with such diseases at designated ‘Centres of Excellence’.
• The salient features of NPRD 2021 are as under:
  • The rare diseases have been identified and categorized into 3 groups:
• Group 1:Disorders amenabletoone-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.
  • Centres of Excellences (CoEs) have been identified for the diagnosis, prevention, and treatment of rare diseases.
• These COEs will be provided a one-time grant subject to a maximum of Rs 5 crore each for infrastructure development for screening, tests, and treatment, if such infrastructure is not available.
  • Provision for financial support of up to Rs. 50 lakhsto the patients suffering from any category of the Rare Diseases and for treatment in any of the CoE mentioned in NPRD-2021, outside the Umbrella Scheme of Rashtriya Arogaya Nidhi (RAN).
• RAN provides aone-time financial assistance to poor patients living below State/UT wise threshold poverty linesuffering fromrare diseases (RD) listed under group 1 for treatment at Government hospitals/institutes having Super Specialty facilities; (Maximum financial assistance is Rs. 20 lakhs).
  • In order to receive financial assistance for treatment of a rare disease, the patient of the nearby area may approach the nearest CoE to get him assessed and avail the benefits.
  • Treatment of patients starts immediately after registration with the CoEs.
  • Nidan Kendras have been set up for genetic testing and counselling services.
  • It has provisions for promotion of research and development for diagnosis and treatment of rare diseases; promotion of local development and manufacture of drugs and creation of conducive environment for indigenous manufacturing of drugs for rare diseases at affordable prices.

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: Only 4 of 12 CoEs for rare diseases utilise NPRD funds in past 3 years