The BLACKSWAN Foundation is the story of a researcher, Dr. Olivier Menzel that rose up against the lack of interest and resources dedicated to research on rare and orphan diseases.
Passionate about genetics since he was a teenager; in 2006 he obtained a PhD (UNIL, EPFL) from the Swiss Institute for Experimental Research Against Cancer (ISREC). When he became Co-head of the research laboratory in pediatric surgery at the Geneva University Hospital (HUG), he decided to do research on a group of rare diseases and worked on the development of a gene therapy aimed to replace liver transplantation in children with a group of orphan metabolic diseases of the liver.
The idea to create the BLACKSWAN Foundation started in 2010, when Olivier Menzel was denied funding from the National Scientific Funding Agency on the grounds that his project was “too ambitious”, this “no” was the last straw. He has long been surprised by the lack of interest in rare diseases, because in addition to finding the cynicism of the system, which invests only if research is profitable, he also observed that the study of rare diseases was a valuable source of information for the treatment of more common conditions, another valuable reason to reward affected people with more research and to start raising awareness on these more than 8’000 pathology listed in the world.
The BLACKSWAN Foundation is the tool of his action. It is a unique foundation that supports research on any type of rare disease and not only on a particular pathology. To address this challenge, Olivier Menzel is surrounded by a strong scientific committee and experts in several fields.
Over the years, the Foundation has raised funds for research and organized annual conferences with hundreds of researchers on rare diseases. The conferences have become a point of reference for specialists in this field over the years. They have led to the emergence of dozens of projects and collaborations around the world. The Foundation also launched an awareness campaign on rare diseases to raise public awareness and an online platform to increase knowledge sharing around scientific research.