National Policy for Rare Diseases- 2021 approved


New Delhi: Union Health and Family Welfare Minister Dr Harsh Vardhan has approved the National Policy for Rare Diseases 2021 recently.

The policy document has been uploaded on the website of Ministry of Health & Family Welfare for general public.  This was a long standing demand  for a comprehensive policy for prevention and management of rare diseases.

The field of rare diseases is very complex and heterogeneous and prevention, treatment and management of rare diseases has multiple challenges.  Early diagnosis of rare diseases is a major challenge owing to a variety of factors that include lack of awareness among primary care physicians, lack of adequate screening and diagnostic facilities.

Rare diseases are also difficult to research upon as the patients pool is very small and it often results in inadequate clinical experience. Despite progress in recent years, there is a need to augment effective and safe treatment for rare diseases.

The cost for treatment the rare diseases is prohibitively expensive. To address all these challenges, a very comprehensive National Policy for Rare Diseases 2021 has been finalized by the Ministry of H&FW after multiple consultations with different stakeholders and experts in the area.

The Draft Policy for Rare Diseases was put in public domain on January 13, 2020 on which comments/views were invited from all stakeholders, general public, organization and States and Union Territories.  All the comments received were examined in depth by an Expert Committee constituted by the Ministry.

Increased focus of research and development and local production of medicines will lower the cost of treatment for rare diseases. The policy also envisage creation of a national hospital based registry of rare diseases so that adequate data is available for definition of rare diseases and for research and development related to rare diseases within the country.

The Policy also focuses on early screening and prevention through primary and secondary health care infrastructure such as Health and Wellness Centres and District Early Intervention Centres (DEICs) and through counselling for the high-risk parents. Screening will also be supported by Nidan Kendras set up by Department of Biotechnology.

A provision for financial support up to Rs 20 lakh under the Umbrella Scheme of Rastriya Arogya Nidhi is proposed for treatment, of those rare diseases that require a one-time treatment (diseases listed under Group 1 in the rare disease policy). Beneficiaries for such financial assistance would not be limited to BPL families, but the benefit will be extended to about 40% of the population, who are eligible under Pradhan Mantri Jan Arogya Yojana.


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