Tue Feb 04 13:53:00 UTC 2025: ## Delay in Rare Disease Policy Cripples Patients, Advocacy Groups Allege
**New Delhi, February 4, 2025** – A delay in the rollout of India’s ₹974-crore National Policy for Rare Diseases (NPRD) is causing severe hardship for patients, particularly children, according to patient advocacy groups. In a letter to the Health Ministry, the groups highlighted the devastating consequences of the delay, citing exhausted funding and a lack of a sustainable plan.
The groups claim that the initial funding under the 2021 policy has been depleted, leaving hundreds of patients, many of whom are children, without access to life-saving treatments. The situation is particularly dire for those suffering from chronic genetic disorders, where a lack of timely diagnosis and treatment can be fatal. Approximately 30% of children diagnosed with rare diseases do not survive past their fifth birthday without treatment, the letter states.
The advocacy groups point to the case of 38 patients from three Centers of Excellence (CoEs) who have exhausted their one-time ₹50 lakh funding cap and are now struggling to continue their treatments. The groups also decry the catastrophic financial burden placed on families, with no alternative funding available.
The delay, the letter argues, not only causes immense suffering but also erodes trust in the government’s commitment to the welfare of rare disease patients. The groups urge the Ministry to implement a sustainable funding mechanism, establish a transparent framework for uninterrupted treatment, and ensure timely access to therapies.
This call comes after a Delhi High Court order on October 4, 2024, directed the Health Ministry to immediately release funds and establish a National Fund for Rare Diseases (NFRD) with ₹974 crore allocated for FY 2024-25 and 2025-26. Despite the court order, no action has yet been taken, leaving families in despair. The advocacy groups are now demanding urgent intervention to address this critical situation.
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