National Policy for Rare Diseases, 2021

The Ministry of Health and Family Welfare has recently approved the "National Policy for Rare Diseases, 2021".

National Policy Highlights for Rare Diseases, 2021

• This policy focuses on the early screening and prevention of rare diseases. This will be done through health and welfare centres. This screening will be supported by diagnostic centres set up by the Department of Biotechnology.
  
  
• About eight health facilities will be designated as excellent centres for rare diseases. They will focus on the prevention and treatment of rare diseases. These centres will be provided with the one-time financial assistance of Rs 5 crore.
  
  
• The Government of India has announced financial assistance of Rs 20 lakhs under the National Health Fund (Rashtriya Arogya Nidhi) for the treatment of rare diseases. The National Health Fund is allocated only to those below the poverty line. However, it is extended this time.

Challenges to be addressed by the policy

The National Policy for Rare Diseases will address the following challenges:

• Research and development are rare for most rare diseases because there is little information about these diseases' pathophysiology.

• Reduction in availability and access to medicines for rare diseases.
  
  
• The cost of treatment of rare disease is prohibitive.

What are the rare diseases?

According to the World Health Organization, rare diseases occur at one or less per thousand population. However, many other countries use their definitions.

A rare disease in India

Rare diseases recorded in India are primary immunodeficiency disorder, cystic fibrosis, Pompe disease, Gaucher disease, Fabri disease, etc.

Policy Implementation

• A national registry for rare diseases will be established at the ICMR (Indian Council of Medical Research).
  
  
• A digital platform will be created to bring the notified centres of excellence together.
  
  
• The Finance Ministry will be requested to reduce the customs duty on import medicines related to rare diseases.
  
  
• State governments will be requested to create a medical genetics department in at least one medical college in the state.
  
  
• AIIMS, Delhi will act as the head in coordination with all other excellence centres to be set up under this policy.

February 28 is celebrated every year as Rare Disease Day.

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