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IMPF ka demand: Rare disease funds ko turant sudharo

IMPF ka demand: Rare disease funds ko turant sudharo

IMPF ne PM aur Health Minister ko yeh bataya ki Group 3a ke Lysosomal Storage Disorders patients ko funds ki kami se treatment mein rukawat aa rahi hai. Forum ne kaha ki one-time Rs 50 lakh ka cap badalna hoga aur continuity funding ki zarurat hai, kyunki ERT ki cost itni hai ki bina funding ke patients ka treatment ruk sakta hai.

Quick rundown

Parliamentary group demands action for rare disease funding.
Over 60 patients have died due to treatment delays.
Policy provides Rs 50 lakh for enzyme therapy but it's insufficient.
ERT has improved survival and quality of life globally.
Forum urges sustainable funding for uninterrupted therapy.

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