Research for rare autoimmune diseases

I've been diagnosed with cryoglobulinemia for a year now, and am still struggling to get my doctor's to get more accurate information. All I seem to get from all of them is that my tests are stable and improving. That doesn't help me try to avoid the issue in my system that led to the change. Before I was hospitalized my tests were normal. The things changed for who knows what reason. I just don't want a relapse or repeat of that ordeal.