Multidisciplinary Neurofibromatosis Program
Neurofibromatosis (NF) is a genetic condition. There are two types of NF:
- NF1
- NF2
A very rare, but related, condition is called schwannomatosis. Patients with schwannomatosis are also treated through the Multidisciplinary Neurofibromatosis Program.
Our Services
Our Multidisciplinary Neurofibromatosis (NF) team at Children’s Hospital Boston, offers comprehensive diagnostic evaluations, follow-up care and genetic counseling for individuals with known or suspected NF.
- Comprehensive evaluationsinclude a physical exam as well review of pregnancy, medical, developmental and family histories, to confirm or establish the correct diagnosis.
- Genetic consultationswith our genetic counselor explain the genetic and hereditary implications of NF for affected individuals and family members.
- Long-term follow-up careis managed through at least one annual visit to the program. If patients or families have questions between visits, we welcome them to speak with our clinic coordinator or schedule additional appointments.
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For children requiring additional evaluations, we offer direct specialty referral to renowned pediatric specialists at Children’s with expertise in NF from areas including:
- Opthalmology
- Endocrinology
- Orthopedics
- Developmental Pediatrics
- Neuropsychology
- Neurosurgery
- Neuro-Oncology/Medical Oncology/Radiation Oncology
- Plastic Surgery
- General Surgery
- Audiology and Otolaryngology
- Dermatology
- Cardiology
- 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. If necessary, your child will have specialty consultations with pediatric doctors familiar with the implications of NF in the fields of:
- Ophthalmology
- Endocrinology
- Orthopedics
- Developmental Pediatrics
- Neuropsychology
- Neurosurgery
- Neuro-Oncology/Medical Oncology/Radiation Oncology
- Plastic Surgery
- General Surgery
- Audiology and Otolaryngology
- Dermatology
- Cardiology
If you have questions between your annual visits, you can always reach our Scheduling Coordinator at 857-218-4018 or our Clinic Coordinator/Genetic Counselor at 617-355-4699. Additional appointments will be scheduled as necessary.
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