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Growing role of non-profits in rare disease research

Extract from Wired:

“This approach—referred to as “venture philanthropy”—is part of a growing movement among rare disease foundations whose long-neglected patients have grown frustrated with the glacial pace of academic science, and are looking for new models to to more directly steer research and accelerate cures.

““In the last few years the rare disease community has really taken on this venture philanthropy strategy to get much-needed funding into research that’s typically avoided by big pharma,” says Alex Graddy-Reed, a health policy researcher at the University of Southern California. She says there’s evidence that nonprofits are emerging as an increasingly important player in funding biomedical research and development, especially for pumping early-stage capital into the gaps left by traditional funders.

“Of the $100 billion invested annually in medical and health R&D, nonprofits make up a still modest but growing share. In 2016, charitable foundations invested nearly $2.7 billion in medical and health R&D, a 3.4 percent increase in US expenditures since 2013, according to a report by health research funding watchdog, Research!America.”

Full article is here.

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