Hundreds of Children with Rare Diseases in Delhi Face Life-Threatening Crisis: Parents Appeal to PM and CJI for Urgent Intervention
New Delhi: The lives of hundreds of children and young patients across India suffering from rare diseases are in grave danger due to halted medical treatments. Parents and patient advocacy groups have made a joint appeal to the Prime Minister and Chief Justice of India (CJI), urging immediate intervention.
Funding Shortage Halts Critical Treatment
Families highlight that one-time funding of ₹50 lakh per patient under the National Policy for Rare Diseases (NPRD-2021) has been exhausted for many, causing treatment to stop. In the past two years alone, approximately 60 children have died, while over 55 patients are still waiting for treatment.
Court Orders Ignored, Health Ministry Appeals
Last year, on October 4, the High Court directed the creation of a national fund of ₹974 cror...









