“National Policy for Rare Diseases 2021” was recently approved
Ministry: Ministry of Health
Key takeaways
Aim: (1) To lower the high cost of treatment for rare diseases with increased focus on indigenous research; (2) To strengthen tertiary health care facilities for prevention and treatment of rare diseases through designating 8 health facilities as Centre of Excellence (CoEs) .
National Consortium shall be set up to provide the required help
Department of Health Research, Ministry of Health & Family Welfare will be its convenor.
Vision: Creation of a national hospital based registry of rare diseases so that adequate data about rare diseases is available.
Focus: 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 patients.
Screening will also be supported by Nidan Kendras set up by Department of Biotechnology.
CoEs will also be provided one-time financial support of up to Rs 5 crores for upgradation of diagnostics facilities.
A provision for financial support up to Rs. 20 lakhs under the Umbrella Scheme of Rashtriya 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).
Do you know?
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.
