Jan. 15, 2020

The Union Ministry of Health and Family Welfare published a national policy for treatment of rare diseases, listing 450 diseases as rare but not providing a detailed roadmap on treatment.


  • In India, Haemophilia, Thalassemia, Sickle cell anaemia and Primary Immuno Deficiency in children, auto-immune diseases, Lysosomal storage disorders such as Pompe disease and Gaucher’s disease are in the rare diseases list.

  • The latest policy creates three categories of rare diseases — diseases requiring one-time curative treatment, diseases which need long-term treatment but the cost is low, and diseases that require life-long treatment and the cost is high.

  • The policy states that the Centre will provide assistance of Rs 15 lakh to patients suffering from rare diseases that require one-time curative treatment under the Rashtriya Arogya Nidhi scheme. The treatment is limited to beneficiaries of Pradhan Mantri Jan Arogya Yojana.

  • It also recommends crowd funding as a source to fund treatment of rare diseases.

  • The policy also intends to kick-start a registry of rare diseases that Indian Council of Medical Research will maintain.