A team approach to care

At the Neurofibromatosis (NF) Clinical Program, we understand that living with neurofibromatosis type 1 or 2 (NF1 or NF2) can mean continually encountering new ways that NF affects your body.

Because so many parts of the body can be affected, our team collaborates with a variety of specialists who have experience treating NF:

Comprehensive, coordinated care

The Neurofibromatosis Clinical Program offers coordinated care that includes:

  • Careful review of your child’s clinical and family history

  • Detailed physical and neurological examinations

  • Ophthalmology (eye) examination

  • Genetic counseling and genetic testing (as needed)

  • Imaging studies (as needed)

  • Consultations with our comprehensive team of medical and surgical specialists

  • Clinical trials (where appropriate)

Tailored, compassionate care for each child

Because each person’s NF is different, we strive to:

  • Tailor evaluations to make sure we understand how NF is affecting your child

  • Care for the whole person and provide support and resources to address all the ways NF affects your life

Our care is continually up to date

Our team members are part of a physician and research team focused on uncovering new knowledge about and treatments for NF. We meet regularly to discuss current standards of care and exciting new developments. Through regular communication, our team is able to provide you with the most up to date and progressive treatment plans.

Family-centered care

We welcome — and encourage you — to be as involved as possible in your child’s care. You are your child’s best advocate and champion. Do not hesitate to contact us with questions or concerns, no matter how large or small.

Early interventions

Providing therapy at an early age to address developmental delays caused by NF is important. Early interventions can help children with NF flourish as they get older — including addressing some of the more common developmental issues such as learning disabilities, ADHD, and autism spectrum disorder.

Therapeutic and support programs

To address emotional and developmental needs, we offer support programs geared toward different ages:

  • Beat NF (2 – 5 years): This music therapy program uses jazz music to address the social, motor and behavioral delays specific to each child. The program:

    • Uses interactive and cooperative play

    • Encourages motor-skills development

    • Strengthens parent and child relationships

    • Encourages positive interactions between children

  • Club NF (grades K – 8): Club NF is a free play-based therapy program for children with NF1 and their families. During these events:

    • Therapists work with each child to improve gross and fine motor, attention and social skills

    • Children swim, bowl and ice skate, among other activities

    • Children form friendships with other children with NF1

  • Teen NF (13 – 18 years): This program is for teenagers with NF1 who struggle with creating positive relationships at home, at school and in the community. The program helps teens:

    • Address common challenging social situations that they encounter

    • Further their social and conversational skills

    • Select friends who appropriately support them

    • Learn to read social cues and enter/exit conversations with peers

Clinical research

The NF Clinical Program is an active member in the Neurofibromatosis Clinical Trials Consortium. That means we are able to offer potential new treatments for children and adults with NF as part of these ongoing clinical studies.