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.
About:
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.
Dear Student,
You have still not entered your mailing address. Please enter the address where all the study materials will be sent to you. (If applicable).
