Jessica, who has CRS, recently started her own site with information about CRS. It is a great site with lots of first-hand helpful information. She has a goal of forming an organization on CRS as well. Check out her site at Caudal Regression Syndrome Association.
I especially like her Recommended Articles, which include an article for parents that would really be helpful early on as well as articles on walking for kids with CRS, how to handle staring, having a support system, etc.
She also has information on sports, wheelchairs and other equipment, and how to meet other people with CRS. All around a very helpful and great site!