Founder of Nobism, Spain
Title: Results of our First Patient Driven Research Month
Biography: Rogier Koning
Nobism is building a platform to support Patients, Leaders and their Advocates to collect data and use it do do research. We started by setting-up a Facebookgroup “Cluster Headache – Patient Driven Research” We collect data about our personal symptoms and all the treatments we do to feel better.
We’ve started Collecting data in July and at the moment of this writing we have almost a 100 patient together collecting their data. Beginning of August we will share and analyse our first data set.
Patient Driven research is not the same as Medical research. Its a research based on statistics, symptoms dropping or rising and comparising of treatments taken. Knowing patients do more than only medicines, we’ve added the option to collect data about all treatments we do, to find the best ones available.
Most patient driven projects are setup NON-PROFIT and need to hold out their hands to get funding. Thats a hand you cannot byte. Nobism builds to create a place were patients can be COMMERCIAL like the rest of the world to generate the income for own research and Advocacy.
Nobism will start by supporting existing patient groeps in research. By adding functionality, we’ll transfer groups to nobism.
We aim to become WORLD LEADER in supporting and representing Patients in Research.