Rare disease patients seek PM’s intervention to secure additional funds for treatment
The Lysosomal Storage Disorders Support Society (LSDSS) urged Prime Minister Narendra Modi to establish interim funding for rare disease treatments after 164 patients exhausted the ₹50 lakh assistance under the National Policy for Rare Diseases. The society emphasized the need for a continuity-of-treatment mechanism and prioritization of high-risk patients. A response from the government is awaited.