registrateyourjourney Posted March 2, 2018 Share Posted March 2, 2018 Why not do our own research, collect data, analyze it and find our own trends about best treatments. I've setup a "Cluster Headache - Patient Driven Research" group on Facebook and I've build an simple app to keep track of any attack and any treatment we do. It doesn't matter if you use medicines, vitamins, Oxygen or Magic Mushrooms. https://www.facebook.com/groups/471529509915015/ My idea is this: If 2 Patients with data about their disease progression would share this with each other, together they would know more. If a 100.000 patients have their data and share it together, they could change Healthcare. I've set this up as Cluster Headache Patient hoping we can setup our own initiative to find proof of best treatments, support others and ourselves in a more active way. Feel free to read also the website nobism.com to get more information on how we want to start. Quote Link to comment Share on other sites More sharing options...
registrateyourjourney Posted March 2, 2018 Author Share Posted March 2, 2018 I also hope the ClusterBuster management will join in, We have to work actively together, all. I made a free tool that we can use in our- and fellow cluster Headache patients benefit. Quote Link to comment Share on other sites More sharing options...
registrateyourjourney Posted March 8, 2018 Author Share Posted March 8, 2018 Its a shame that there is so little respons. I'm sorry to complain. But we all complain. Complain that not enough research is done. Complain that we have so much pain. We complain complain and complain. Lets STOP And work together. What do we have to loose? Quote Link to comment Share on other sites More sharing options...
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