Onno Faber

is creating Tools and projects to accelerate treatments for rare diseases.

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About Onno Faber

I’m Onno. I’ve been solving problems since I was a kid. I’m an engineer, designer and entrepreneur.

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. Sounds scary? I can tell you, it is! However, at this point I met so many other patients –of which a lot of them are young kids– in a much worse physical condition than I currently am. After I got diagnosed I quickly decided I want to devote my energy, time and resources to help accelerate treatments for this condition, and by doing that potentially help many other rare diseases as well. You may not know this, but rare diseases are very common. 1 out of 10 people have one of the 7000 identified rare diseases, and about half of them are kids!

My mission is to help advance therapies for patients with a rare disease, like the one I have. I do this using my skills and background in entrepreneurship, technology, and design to build tools and infrastructure that creates a structural change. I am working on exploring, generating, prototyping and building out new ideas which should be embedded in the real world. At the moment, I’m volunteering in a research lab at UCLA to identify the next set of problems I can contribute to.

All great things start small. I started a Patreon campaign to help build and grow this community of problem solvers. With your support I can continue and improve all communication (through video and writing) around the learnings and experiences in this journey, while my primary focus will (and should) always be doing the work itself. The act of sharing not only the wins and successes, but also the hardships and failures is a vital part of making progress in finding treatments for rare diseases, as well as living with them. Patreon supporters can participate in the Discord channel to get real-time updates, discuss the various projects I'm working on and share new ideas with the group.

Stay tuned for updates!
Goals
$12.81 of $1,000 per month
When I reach this goal, I can hire support for creating better videos and podcasts.
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