National Policy on Rare Diseases
Rajya Sabha MP from the Nationalist Congress Party Fauzia Khan on Friday raised concerns over the benefits of the National Policy of Rare Diseases (NPRD) not reaching any patient with rare diseases even after several months since its introduction. 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. Lysosomal storage disorders, Gaucher disease, Pompe disease, MPS 1 and 2 and Fabry disease are
some of the rare diseases. In March, 2021, the Government has launched National Policy for Rare Diseases (NPRD), 2021, for the treatment
of rare disease patients. The salient features of NPRD, 2021 are as under: The rare diseases have been identified and c…
