Treatment in limbo for months, patients with rare diseases still wait for relief — despite Delhi HC order

Delhi High Court directed that the Centre establish a National Fund for Rare Diseases and allocate Rs 974 crore for 2024-25 and 2025-26. This was to be approved and transferred in 30 days.

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From a seven-year-old in Srinagar to a 16-year-old in Delhi suffering from “rare diseases”, a recent Delhi High Court verdict on ensuring uninterrupted treatment for patients like them came as a ray of hope.Since their diagnosis, patients of rare diseases — defined by WHO as a debilitating, lifelong condition that affects 1 or fewer people in 1,000 — and their kin faced challenges in accessing life-saving medication, whose cost runs into lakhs, and issues with its supply. A total of 104 petitions were finally moved in court, with over 100 patients seeking relief.