Over three years ago I was diagnosed with a very rare kidney disease. With less than 50 in the world ever diagnosed, it was determined I might be the only patient in the US. In an effort to find information that was useful, I found http://www.rsnhope.org, a website formed by an almost life-long kidney disease patient. Lucky for me I lived only 70 miles each way from the monthly support group meetups, and have been attending since April 2015. Lori Hartwell has populated her website with so much information! I am not associated with Renal Support Network, except to attend monthly discussion groups, and volunteer my time as needed. I have no vested interest. But I strongly believe there is a lot of information available there for anyone with kidney disease, family members and caregivers.