your cause and open health data

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.