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There are many ways you can help children and their families get the care they need.
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 Boston Children’s Hospital has special expertise in treating children with both types of NF.
Our Multidisciplinary Neurofibromatosis team at Boston Children's Hospital offers comprehensive diagnostic evaluations, follow-up care and genetic counseling for individuals with known or suspected NF.
Neurofibromatosis (NF) is a genetic condition. There are two types of NF:
A very rare, but related, condition is called schwannomatosis. Patients with schwannomatosis are also treated through the Multidisciplinary Neurofibromatosis Program at Boston Children's.
Our Multidisciplinary Neurofibromatosis (NF) team at Boston Children’s Hospital offers comprehensive diagnostic evaluations, follow-up care and genetic counseling for individuals with known or suspected NF.
For children requiring additional evaluations, we offer direct specialty referral to renowned pediatric specialists at Boston Children’s with expertise in NF. We support and educate patients and families by giving them materials discussing the natural history and related medical issues of NF to take home. And, we maintain close relationships with the Children's Tumor Foundation and Neurofibromatosis, Inc., both of which can provide information and support to families.
Our Treatment Approach
Neurofibromatosis (NF) is an unpredictable disorder. Many people with NF1 don’t have any major medical, developmental or cosmetic issues. Others will face medical or developmental problems at some point in their life. Since we are unable to determine who may have an issue, what it may be, or when it may occur, we recommend close follow-up and evaluation of any problem as it occurs. This includes, at a minimum, a yearly evaluation in our program, as well as a yearly ophthalmologic evaluation.
Your child’s care will be overseen by a geneticist or pediatric neurologist at Boston Children's Hospital. If necessary, your child will have specialty consultations with pediatric doctors familiar with the implications of NF in the fields of:
If you have questions between your annual visits, you can always reach our Scheduling Coordinator and our Clinic Coordinator/Genetic Counselor at 617-355-6394. Additional appointments will be scheduled as necessary.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”