This might be news to some of you and to others not so much, but still very interesting.
A German support group for Alport Syndrome was created several years ago. Their website is www.alport.de
When you first visit the website you have to pick a language to view the site in. Once in there is a wealth of great information.
Use all the 5 options on the top of the page and watch the links listed on the right side. There is a lot of great research papers posted.