The standing finance committee has approved a proposal for adding a sub-component under the umbrella scheme of Rashtriya Arogya Nidhi (RAN) for provision of one-time financial assistance to those below threshold poverty line for specified rare diseases which require one-time treatment.

About Rare Disease: A rare disease is a health condition of low prevalence that affects a small number of people compared with other prevalent diseases in the general population.It is estimated that globally around 6000 to 8000 rare diseases exist with new rare diseases being reported in the medical literature regularly. However, 80% of all rare disease patients are affected by approximately 350 rare diseases. 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%.Rare diseases include genetic diseases, rare cancers, infectious tropical diseases and degenerative diseases. 80% of rare diseases are genetic in origin and hence disproportionately impact children.