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.
You may also be interested in...
India Exempts Rare Disease Drugs, Keytruda From Customs Duty - Is It Enough?
India has exempted imports of top-selling oncology drug Merck’s Keytruda from customs duty as also rare disease drugs listed in the National Policy For Rare Diseases. However, patient advocacy groups feel more fiscal measures and manufacturing incentives are needed to improve access
It Takes A Village: Roche’s India Rare Disease Approach, Crowdfunding Support
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 Pushing Ahead With Rare Disease Policy Plan
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.