My name is Rogier Koning. I’m born and raised in the Netherlands. As a web designer, interface builder, I was free to work where I wanted and moved to Spain in 2005.
Around 2007-2008 I started to get terrible headaches that turned out to be Cluster Headaches, nicknamed suicide headaches. I turned out to have the chronic version 🙁
My journey of many years of pain, experimenting treatments I start the Nobism project. The big question I tried to answer was how to become pain-free, what treatment works best. We all do this in our community, individually.
Nobism tries to set up a platform where we as a community can collect data about our attacks and treatments and use it as a community to understand who we are as an individual, compared to other patients, how we change through time and what effect treatments seem to have on these changes.
The big challenge is not getting people together to collect enough data, many already collect data on a daily base.
The challenge is to have infrastructure as a community, where we can collect and store our own data. Where we can create projects and share our data with individual consent.