RARECast
Bridging the Gap Between Basic and Commercial Research for Rare Disease
As a scientist seeking funding to do rare disease research, Olivier Menzel confronted the lack of interest from funding sources. He eventually created the Blackswan Foundation to support research on any type of rare disease. Since then, the foundation has held scientific conferences, raised awareness about rare disease, and been involved in a large number of projects and collaborations around the world. The foundation also created the RE(ACT) Community, a crowdfunding and knowledge-sharing digital platform that connects researchers, patients, and other rare disease stakeholders. We spoke to Menzel, chairman and founder of the Blackswan Foundation, about the challenges of rare disease research, how it has worked to address common obstacles, and how it is serving as an accelerator to bridge the gap between basic scientific and commercial research.