Onno Faber is a 40-year-old Netherlands native living in California who trained as an architect and engineer, but fate has pushed him to become a serial biotech entrepreneur. He began with AllStripes in 2017, a straight biotech research firm. But then his 2015 diagnosis of neurofibromatosis type 2 (NF2), a rare auditory tumor disorder, got worse. Even on a 40-pill per-week drug regimen, his tumor grew by 40 percent. With time running out, Faber learned of a drug called everolimus that generally isn’t intended for NF2. The treatment was successful, and since it came through a wide net of connections in biotech, Faber started thinking about sharing those connections with other people suffering from rare diseases. The result was Rarebase.
Why They Made the Worthy 100: With Rarebase. Faber is trying to fix what many view as a broken process in researching cures for rare diseases. Faber estimates that upwards of 400 million people, many of them children, are currently battling rare diseases worldwide. Most are isolated from any research and even cures that might help them. Rarebase connects those people with scientific and financial support. It also helps link research efforts to foster hive-mind-style collaboration on data and treatment options. The idea is to build a platform that connects patients and scientists, thereby advancing research for everyone.