New Delhi, Nov 5 (PTI) Rare disease patients and their advocacy groups from across the country have written to Chief Justice of India B R Gavai and Prime Minister Narendra Modi on behalf of children and young adults on the brink of losing their lives to ensure sustainable funding in the upcoming Supreme Court hearing on November 7.

Hundreds of children are being denied treatment due to administrative delays and the restrictive one-time funding limit under the National Policy for Rare Diseases (NPRD) 2021, they said in the letter.

According to the policy, financial assistance of up to Rs 50 lakh per patient is provided for the treatment of identified rare diseases. This support is provided to patients registered with any of the 12 identified centres of excellence across the country for th

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