-I requested an appointment with Mayo Clinic and was declined. Apparently there are several collagen based syndromes -including Marfans but few people specialize and we still don't know who to go to for a Genetic test to determine specific type. My daughter is 22 and some types are very life limiting and some you should never get pregnant, we were told to see a Rheumatologist-but literature suggest you need someone who knows and specializes in collagen based syndromes-anyone able to help??