Multidisciplinary Neurofibromatosis Program
If your child has been diagnosed with neurofibromatosis, you probably have many questions about what it is and what comes next. Neurofibromatosis, commonly called NF, is a genetic disorder. There are two forms of NF (NF1 and NF2), and it’s important to know that they act and are treated very differently. Our team of NF specialists at Children’s Hospital Boston has special expertise in treating children with both types of NF.
Our Multidisciplinary Neurofibromatosis team offers comprehensive diagnostic evaluations, follow-up care and genetic counseling for individuals with known or suspected NF.
- Our core team includes three geneticists, a neurologist and a genetic counselor who have extensive experience treating children and families with NF.
- Pediatric specialists from many different medical areas, including ophthalmology, endocrinology, and surgery, among many others, all of whom are familiar with the implications of NF in their area of expertise, join a child’s team as needed.
- We offer unique clinical trials and treatment approaches through national research collaborations as well as studies we develop in our own research programs.
- In addition to providing medical care, we support the patient and family’s emotional well-being by providing psychosocial support and educational materials.
Did you know?
We offer several clinical trials for children with NF, some of which are offered in affiliation with researchers at Dana-Farber Cancer Institute and the Pediatric NF Clinical Trials Consortium.
Did you know?
We see over 500 patients with suspected or confirmed NF each year, and we have been designated a Children’s Tumor Foundation NF Center of Excellence.