Rare Disease (Download PDF)

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According to World Health Organization, rare diseases are the one that affects one or less than one in 1,000 and it is a global issue. World Rare Disease Day was celebrated on 28th February 2019. The definition of rate diseases vary from country to country.

Characteristics of Rare Disease

  • Rare diseases include genetic disorders, rare cancers, infectious treatments, etc.
  • 50 % of the children are affected by these rare diseases.
  • It affects only small number of people.
Rare Diseases World Health Organization

Problems with Rare Disease

  • Lack of research availability for these diseases.
  • Lack of attention and knowledge among the people about this disease.
  • Diagnosing is not available for rare disease because of it lack of research and medicines.
  • Misdiagnosis
  • Treatments for the disorders are more expensive than other diseases because 80 % of rare diseases are in genetic in nature. The cost of treatment is ranging from 25 lakh to 4 crore and even there is no guarantee for the treatment.
  • It is leading to financial burden on people.
  • Lack of effective implementation of policies.
  • They are not getting proper treatment because of lack of national policy for the treatment of rare diseases.
  • According to the Union Health Minister about 450 rare diseases are recorded in India.
  • There is need for national policy for rare diseases it will help in the research, resource allocation and infrastructure.

Government Initiatives

  • The Delhi court in the Mohammed Ahmed vs. Union of India directed the government to make a national policy on rare diseases in 2013.
  • The Union Ministry of Health and Family Welfare considered rare diseases as a public health challenge but in 2018 government rolled back the policy due to bureaucratic barriers, expensive treatment, high cost for the medicines etc.
  • According to the Indian Society for Clinical Research (ISCR) , 70 million people are suffering with the diseases.
  • New Health Policies needs to be framed.

- Published/Last Modified on: December 12, 2019

Policy/Governance, Health, Govt. Schemes/Projects

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