Draft National Policy for Rare Diseases has been finalized and placed on the website of the Ministry of Health and Family Welfare with a view to elicit comments / views of the stakeholders, including the States/UTs and the general public.
In the meanwhile, under the Umbrella Scheme of Rashtriya Arogya Nidhi, a component of rare diseases has been included w.e.f. 01.01.2019 for providing one-time financial assistance upto Rs.15 lakh to patients belonging to families living below threshold poverty line for treatment of specified Rare Diseases amenable to one-time treatment in Government hospitals. This covers disorders amenable to treatment with Hematopoietic Stem Cell Transplantation (HSCT) including such Lysosomal Storage Disorders (LSDs) for which Enzyme Replacement Therapy (ERT) is presently not available and severe form of Mucopolysaccharoidosis (MPS) type I within first 2 years of age.
The Minister of State (Health and Family Welfare), Sh Ashwini Kumar Choubey stated this in a written reply in the Rajya Sabha here today.