India Rare Disease Policy Proposes Crowdfunding But Patients Feel Let Down

Draft policy moots crowdfunding for high-cost rare diseases alongside financial support for those "amenable to one-time treatment" but falls way short of some patient groups' expectations.

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India Outlines Policy Proposals For Rare Diseases • Source: Shutterstock

India’s draft National Policy for Rare Diseases 2020 has outlined plans for financial assistance to treat specific disorders while also proposing “voluntary crowdfunding” for certain high-cost rare diseases, an idea that has been derided by some.

The draft, which some patient groups see as a significant let-down, moots financial support of up to INR1

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