My name is Lew M.. I do not want to waste your time because I know you are fighting for you life. I don’t have a cure for you. I just want to tell you how much I applaud your approach to getting help. My daughter has a rare condition and getting medical data from others with her condition is a huge bottleneck to getting progress.
I am interested in funding/driving a health data donation bank. Like a blood bank, but a data bank. If you have ideas, please let me know. If you have people I should talk to, let me know.
I am curious of what data format you used.
I apologize I don’t have answers for your situation. I do hope you have gotten a response. I am a massive believer that open source is the answer to many of these issues. May it work its magic in time for you.