Family Resources

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. The Washington University NF Center is 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.

The Therapy Vault

Check out our monthly blog posts, written by our occupational and physical therapists, where we address a variety of topics that support children with NF achieve the best version of themselves.

Educational brochures

Discover everything there is to know about NF1 with these educational brochures. They address concerns about NF1 across the lifespan from first diagnosis, to learning disabilities, to disclosure and more.

Newsletters & annual reports

Check out our newsletters and annual reports containing updates on the latest research advances and patient care updates at the Washington University NF Center.

App recommendations

iPads are great tools for children with NF1 to overcome fine motor, behavioral and academic challenges. Check out our app recommendations to start improving skills in your child with NF1.

Emotional wellness

Handling a diagnosis of NF1 can be both physically and emotionally challenging. Get book and activity recommendations, as well as conversation starters to open the lines of communication about NF with your children.

Physical fitness 

Learn about typical childhood development and discover activities to improve motor skills in children with NF1.

FAQs

Get all of your questions about NF answered.

Additional web resources

Explore other websites containing information about neurofibromatosis.