We believe providing exceptional care to individuals affected by NF1 extends beyond the patient care provided in our clinical program at St. Louis Children’s Hospital. Being diagnosed with NF1 can be an overwhelming experience, not only for the individual receiving the diagnosis, but also for family members and friends. We are here to support you from the point of diagnosis to actively managing your NF1 in everyday life.
We built this family resources section to help families affected by NF1 learn more about the condition, hear about other patients’ experiences living with NF1, obtain physical and occupational therapy recommendations and identify effective ways to talk about NF1 with the people around you.