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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Roche Pharma India CEO and managing director, V Simpson Emmanuel, outlines the company's multi-forked approach, including collaborating with a crowdfunding platform, to move the access and treatment needle for Evrysdi in India. The Swiss firm, along with industry associations, also suggests the need for a formal accelerated regulatory pathway in India for rare diseases.
India appears to be on course to developing a national rare disease policy, with the adoption of a specific definition for rare diseases and the initiation of a rare disease registry in the country.
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