Rare Disease Day

February 29th is observed as the Rare Disease Day. A World Economic Forum study reported that 457 million people are affected by these rare disease across the world.

  • Orphan Disease:

A rare disease is also called an orphan disease. These disease affect a small percentage of the population and usually have few treatment options. Most of the orphan diseases are caused by genetic disorders. 30% of the children affected by rare diseases die before their 5th year.

  • Rare Disease in India:

Each country decides which diseases are rare based on their prevalence, severity, treatment options etc. In India, disease that are considered rare include: Haemophilia, Thalassemia, sickle-cell anaemia and primary immune-deficiency in children, auto-immune diseases, Pompe disease, Hirschsprung disease, Gaucher’s disease, Cystic Fibrosis, Hemangiomas and certain forms of muscular dystrophies.

  • India’s Policy on Treating Rare Diseases :

In January, the Union Ministry of Health and Family Welfare published a National Policy for dealing with such orphan diseases. It covers 450 rare diseases. It calls for a registry of rare diseases (to be maintained by ICMR), categorisation of such diseases (those requiring one time treatment, those requiring long-term low cost treatment and those requiring long term high cost treatment), category specific financial assistance through Rashtriya Arogya Nidhi scheme and the PM Jan Arogya Yojana.

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