By comparison with the controls, adult NF1 patients were less likely to have private insurance, less likely to be employed, equally likely to be married, and less likely to have children. One half of cases had disease features compromising health and well-being (Riccardi severity ≥ 3). NF1 patients received care for NF1-related problems from a total of 26 different specialties. Excluding neurofibromas, 43% of cases had cancer compared to 10% of controls [p<0.0001, OR 5.38(2.53-11.4)]. Behavioral health problems were found in 60% of NF1 patients compared to 37% of controls [p<0.001 , OR 2.61(1.52-4.50)]. Only 27% of women ages 30-50 had undergone age-appropriate enhanced breast cancer surveillance. 93% of cases referred to a dedicated adult NF1 center underwent a change in management upon establishing care.