While wandering around the internet, I came across this websiteUnitio
which says that it's aim it to integrate research and patient experience to find treatements for T1.
They are also having their annual meeting in Boston, MA on May 6 with a panel including five T1D people.
I don't know anything about Unitio and whether it is research-oriented, patient-oriented or drug-company oriented. And maybe others here already know a lot about it. I just came across it and hoped that the information might be useful to someone!
Best wishes to all!