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Whether there’s a family history of neurofibromatosis 1 (NF1) or the diagnosis comes straight out of the blue, no parents are ever ready to learn that their child has a chronic and unpredictable condition. Many are left feeling overwhelmed, confused and uncertain. If this has happened to your family, we’d like you to keep in mind two things:
Many families have been down this path and learned how to help their children thrive, and you will too. Here at Children’s Hospital Boston, there are lots of ways we can help.
There’s a wide range of ways that NF1 can affect a child with the condition, but most kids don’t have the most serious complications and will lead healthy, productive lives.
Neurofibromatosis 1 is a genetic condition that causes symptoms including tumors (called neurofibromas) formed from nerve tissue. While the tumors are usually benign (non-cancerous), they may be a concern if their location means that they’re pinching a nerve or otherwise interfering with other parts of the body.
How Children’s Hospital Boston approaches neurofibromatosis
Our multidisciplinary Neurofibromatosis (NF) Program is a specialized clinic within the Division of Genetics that offers comprehensive diagnostic evaluations, follow-up care and genetic counseling for children, teens and young adults. We see over 700 patients with suspected or confirmed neurofibromatosis each year. We offer:
Our program has been designated a Children’s Tumor Foundation NF Center of Excellence, and as a member of the Harvard Medical School Center for Neurofibromatosis and Allied Disorders (CNfAD), our clinicians and researchers meet with colleagues from Massachusetts General Hospital and Dana-Farber Cancer Institute to discuss issues related to NF and host a yearly educational conference. Your child is in good hands with us.
“Helping Your Child with Medical Experiences: A Practical Parent Guide” Download a free booklet, “Helping Your Child with Medical Experiences: A Practical Parent Guide” (pdf) and read about topics including:
Neurofibromatosis 1: Reviewed by Mira Irons, MD, and Nicole Ullrich, MD, PhD
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