National policy on rare disease

National policy on rare disease

(GS PAPER-3, Inclusive Growth and issues arising from it

Source- pib)


Recently the Ministry of Health and Family Welfare has announced a policy on rare disease after Multiple consultation with various stakeholders of this field. 

What is rare disease-

WHO define rare disease as a lifelong Disease or disorder with the prevalence of one per thousand

Objective of the policy

  • To cut down the cost of the treatment  of the rare disease 
  • To promote research With the help of national consortium which was made under the Ministry of Health and Family Welfare
  • To increase the production of lower cost medicine 
  • To create National hospital based registry for rare disease
  • The policy also focuses on Early screening and prevention through primary and secondary Healthcare infrastructure and Wellness Centre
  • Screening will also be done by Nidan Kendra  which was set up under department of biotechnology

Challenges related to rare diseases

  • There is a sort of medicine And available medicines have very high cost so so the people who are belonging from the lowest strata of society Are Compelled to die
  • There is the lack of indigenous Research Centre related to rare diseases
  • Since the penetration of Rare disease is very low  therefore it has Never been and agenda for the political parties to work on it
  • There is lack of awareness among the people about rare diseases

Government approach-

  • Government of India is providing a sum of rupees 20 lakh under the umbrella scheme of Rashtriya Arogya Nidhi For the treatment of of rare diseases
  • Policy also proposes the crowd funding mechanism to encourage Individual and private stakeholders to work for the rare diseases

-Khyati Khare


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