India Rare Disease Policy Proposes Crowdfunding But Patients Feel Let Down
Executive Summary
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...
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.
Pre-work Rigour, 'Clean' Documentation Key As FDA Unlocks Remote Inspection Tools
A senior Parexel executive and ex-FDA pharmaceutical quality assessor emphasizes at a conclave why “first impressions matter now more than ever” as the agency deploys complex alternate inspections tools which the pandemic provided, and that companies need to ensure that they get things right the first time.