Solving the problems in rare disease
Co-founder & CEO, Rarebase.org
Possibility thinker, problem solver, entrepreneur, public speaker, rare disease patient. Most recently co-founder and CEO of Rarebase.org
Onn says “I love to build stuff. I started my first internet company in high school and have a degree in architecture. Along the way I started multiple projects and companies in education, technology, sustainability, design thinking and medical research. I’m always trying to create new opportunities and solve the most pressing problems. I grew up in the Netherlands and live in San Francisco.
A few years ago I’ve been diagnosed with a rare genetic disease that causes tumors to grow in my central nervous system, which puts me at risk for losing my hearing, eyesight and mobility. After that I started RDMD (now rebranded as ALLSTRIPES), helping rare disease communities unlock important research data. I’m currently working on a new project, Rarebase.org, to advance the mission to accelerate the process of finding treatments for rare diseases.
Rare disease is a complex problem and although every disease is different, as patients we find ourselves in the same boat. What can we do better as a community to increase the chances of finding a treatment? Watch Onno’s TEDx talk to learn more, hear about the hackathon where 300 people turned up to hack on his genome, and have your questions ready to pose for his RAREfest Q&A session with the audience.
Who is your hero?
I meet so many patients who, despite the cards they’ve been dealt, are able to keep an optimistic attitude towards life. I am learning from them every day and am hugely motivated to work with them and their families to try and pave the way to finding treatments.
Where is your favourite place in the world?
San Francisco bay area… Not only is the nature around here beautiful, the spirit is high and I feel like a fish in the water. When I started my first company when I was in high school, I picked the title “possibility thinker” for my business card. San Francisco is full of possibility thinkers, and people who want to help to create positive change.
What is your greatest achievement?
I honestly don’t think in terms of achievements, I’m doing the best I can with what I have – outcomes are never guaranteed.
What is your wish for the future of rare disease?
For every patient to get a chance and hope to make progress in the effort to find solutions for them and their fellow patients.