A few years ago, Ono Faber had successfully launched a start up in Silicon Valley when suddenly he lost hearing in one year. After many doctor visits and scans, he got the worst news possible, he had a rare disease NF2 which caused tumors to grow in his nerve tissue and brain. He might lose hearing in his other ear and become completely deaf, or his optic nerve could be affected, causing blindness, or motor nerves could grow tumors which cause paralysis.
He got to work building a platform RD-MD (Rare Disease MD) to help organize other patients with his condition and enable to them to share data. 5 yrs later he is going strong, expanding the platform to help patients search for treatments for all sorts of rare diseases, of which there are more than 7000. He lives each day to the fullest and takes nothing for granted, as his tumors may grow at any time, even though he has found some treatments to slow them.