Rare Disease Dashboard
Rare Diseases Portal

Constitution of the Central Technical Committee for Rare Diseases

The Policy delineates the role of several ministries in achieving the measures envisaged. Each Ministry and concerned department(s) is required to develop an implementation framework on measures to be taken by them on their sector wise response to tackling rare diseases.

A rare disease is a health condition of a particularly low prevalence that affects a small number of people compared with other prevalent diseases in the general population. There is no universally accepted definition of rare diseases and the definitions usually vary across different countries. However, the common considerations in the definitions are primarily, disease prevalence and to varying extent - severity and existence of alternative therapeutic options (1).

It is estimated that globally around 6000 to 8000 rare diseases exist with new rare diseases being reported in the medical literature regularly (2,3,4,5). However, 80% of all rare disease patients are affected by approximately 350 rare diseases (6).

Paradoxically, though rare diseases are of low prevalence and individually rare, collectively they affect a considerable proportion of the population in any country, which according to generally accepted international research is – between 6% and 8% (7,8). Rare diseases include genetic diseases, rare cancers, infectious tropic diseases and degenerative diseases (9). 80% of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear.

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