registrateyourjourney Posted February 26, 2017 Share Posted February 26, 2017 I'm off to the Mobile World Congress in Barcelona to try to find funding for the app. Problem only is that ticket cost €799,- for the cheapest ones and platinum tickets will cost €5.000,- So no entry for me. But, i've decided to solve this problem in an easy way. I've made myself a sigh I can wear on the frond an on the back of my body and I'm going to try to get attention that way. Big sign saying "Patient-driven eHealth start-up looks for €250.000" with a QR code below it leading the visitor to my pdf presentation that contains a link to a paypal payment service. All my friend think I lost something somewhere on the way but I don't care, A "NO" I have already, lets see if we can get a "YES" 2 Quote Link to comment Share on other sites More sharing options...
registrateyourjourney Posted March 8, 2017 Author Share Posted March 8, 2017 What a crazy ride was that last week. Barcelona full of suits, prices for hotels sky high and me walking around with my sign asking for funding to take our app to the next level. But I had a lot of contacts last week and could finally go into the congress for free because someone still had a entry-code to get a ticket. They also put me on the stage to do a pitch in front of the CEO of Beyer.... But no money yet to develop the app and platform to inform our specialists or share our data with research, but I did collect a lot of contacts from big companies that really liked the idea. So most of them I can inform once I have my plans for setting it all up finished. What I will do now is start to form a team because before I can get funding, there needs to be a team. If there is any bright person here that thinks he/she can help, don't hesitate to send me an email. Quote Link to comment Share on other sites More sharing options...
registrateyourjourney Posted March 15, 2017 Author Share Posted March 15, 2017 Tomorrow I'll be off to the Netherlands. My last trip to the eHealth week in january in the Netherlands and my trip to Barcelona (spain) to the Mobile World congress gave me enough contacts now to setup a professional team. So I've made appointments with IT, Marketing and financial companies and some specialists. The goal is to setup a team to build the app and a Platform to compare data, this way we can compare our collected data with data of others, maybe finding out why one patient responds to a treatment and the other doesn't. Also to collect data and show the world what kind of treatments we clusterheads use that seem to be working good. Maybe this way research will pick it up faster and validate these treatments. I hope you like my efforts, any questions ? Quote Link to comment Share on other sites More sharing options...
registrateyourjourney Posted April 4, 2017 Author Share Posted April 4, 2017 Last week I've been to the netherlands to speak to all the specialists I've met during the last travels and other people that are interesting to join our team. The idea was to see if our app would have a change of getting funding. The specialists I've spoke were very positive, they all saw the potential if we would collect all data about our cluster attacks, medicine use and especially what more we do to feel better. They did understand the idea that there are more solutions than only taking medicines and also feel that knowing more about that could shine some new lights on cluster headaches. But, they didn't get my setup because its is out of their view. Lots of specialists like an idea when it connects to their speciality, so a migraine app for one, a diabetic app for an other. But a general registration tool to know all a patient does is out of their scope. So I'm a bit confused now. A perfect commercial fit for the app would be to help patient research. But patient research led by researchers often limit a lot because they are used putting up borders. The idea of the app is that it should not have border to get the full scope of what a patient does to feel better. Because I want this to be a patient driven initiative I should go on the way I'm doing, hoping to find somebody who understands the impact of the idea and is willing to spend money on it. Quote Link to comment Share on other sites More sharing options...
registrateyourjourney Posted April 12, 2017 Author Share Posted April 12, 2017 We are working hard to get our app used in a trail of Dutch headache patients in general (migraine, cluster, tension etc) to see if Time-based data can give us more understanding. I'm building a team at the moment to start building a platform so we can share and compare our data with other patients or specialists. And I think I've found a company that builds and supports software. They are very interested in helping us setting up the platform and security. I do hope clusterbusters will join the group as well, we could collect so much interesting data together ! Quote Link to comment Share on other sites More sharing options...
urs Brasil Posted April 12, 2017 Share Posted April 12, 2017 Can you now show up with some paperwork eq. concept, costs and time and sofort or still working on it? Quote Link to comment Share on other sites More sharing options...
registrateyourjourney Posted April 18, 2017 Author Share Posted April 18, 2017 Hi URS, No I don't have any paperwork yet, concept seems clear as far as I see it but any questions are more than welcome. But the idea is very simple. If every patient would register their attacks and symptoms and all they do to feel better, we could get a clear view what patients do just by looking at the registrations/timeline. If symptoms registration drops in intensity or the amount of attacks go down, after starting a treatment, we could have a direction that this treatment is working. If we see the same pattern by others, we get more proof that the direction is good. If some don't respond like the others, maybe we could see difference in their timeline compared to the ones that do report effectiveness. But my idea is only to collect these data in a very simple way. I do have the head of operations EMEA of SAP in my team now and a Dutch IT company that is very happy to help us build the platform so we could start collecting data and help us making a better timeline. So the only problem now are patients to help collect data. I have already around a 300 downloads of the app, but no idea how many are using it right now because I don't want to collect data without any security. But now I have a new partner, we can start doing that. Most important point in all is our privacy. So I understand that data sharing could proof to be a difficult point. But every person has to decide by them selves if they want to share. If it come available in the app I will build in a very clear switch to switch sharing on or off. So please join the team, give me advice and ideas and lets start to collect data to help specialists finding a cure for us. Quote Link to comment Share on other sites More sharing options...
registrateyourjourney Posted April 18, 2017 Author Share Posted April 18, 2017 What I would like is that we advice the app to all the people on clusterbusters, so it will be the standard to collect data of headache patients. Quote Link to comment Share on other sites More sharing options...
registrateyourjourney Posted May 3, 2017 Author Share Posted May 3, 2017 I've just been to the Netherlands again and spoke to some big IT companies to see if they can support our APP-platform for further development. I will keep you informed if I have news about working together with them. 1 Quote Link to comment Share on other sites More sharing options...
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