National Policy for Rare
Diseases, 2021
Why in News?
About
What is a rare disease?
Caregivers to patients with ‘rare diseases’ and affiliated
organisations are dissatisfied with the National Policy for
Rare Diseases,2021.
• Aim: The policy aims to lower the
incidence and prevalence of rare
diseases based on an integrated
and comprehensive preventive
strategy.
• The strategy includes awareness
generation, counselling
programmes, providing affordable
Health Care among others.
• A rare disease also referred to as an orphan disease, is any
the disease that affects a small percentage of the population.
• It has a prevalence of 1 or less per 1000 population.
• Most rare diseases are genetic and are present throughout a
person’s entire life, even if symptoms do not immediately
appear.
• The commonly reported rare diseases, include Haemophilia,
Thalassemia, Sickle cell anaemia, auto-immune diseases
Highlights of the National Policy
for Rare Diseases, 2021
• Categorisation: The policy has categorised rare diseases into three
groups
1. disorders amenable to one-time curative treatment;
2. those requiring long term or lifelong treatment;
3. and diseases for which definitive treatment is available but
challenges are to make the optimal patient selection for benefit.
• Government Support:
o The government will provide Financial support of up to Rs. 20 lakh
under the Umbrella Scheme of Rashtriya Arogya Nidhi for
treatment of those rare diseases listed under Group 1.
o Moreover, Beneficiaries for such financial assistance would not be
limited to BPL families. About 40% of the population, eligible under
Pradhan Mantri Jan Arogya Yojana will also be eligible for
assistance.
o Further, for group 2, the State Governments can consider
supporting specific patients. It includes a rare disease that can be
managed with special diets or hormonal supplements or other
relatively low-cost interventions (Diseases listed under Group 2).
• Voluntary Crowdfunding: The government has said that it will assist in
voluntary crowd-funding for the treatment of Group 3. It is
because it will be difficult to fully finance the treatment of high-
cost rare diseases of Group 3.
• The policy also envisages the 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.
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