Kin of kids with ultra-rare diseases ask PM to intervene on special funds

A leading patient advocacy group and families of children battling ultra-rare diseases have appealed to Prime Minister Narendra Modi to direct the Union Health Ministry to urgently implement the Delhi High Court’s order establishing a National Fund for Rare Diseases (NFRD).

- KAVITA BAJELI-DATT @New Delhi

The move, they say, is essential to save dozens of children and young adults whose lives hang in the balance due to delays in treatment funding.

The appeal, also addressed to Chief Justice of India BR Gavai, urged that the pending Special Leave Petition (SLP) filed by the Centre be listed and heard at the earliest, and that the October 4, 2024, Delhi High Court order be restored in full. The landmark judgment had directed the Centre to set up the NFRD with an initial allocation of %974 crore to ensure uninterrupted access to lifesaving therapies for rare disease patients.

The case is now listed for hearing on November 7.