Our multidisciplinary team of care providers from several specialties offers comprehensive care and management, as well as access to progressive therapies and clinical research opportunities, to patients with: Neurofibromatosis Tumor Surgery | Hannah's Story. Read more the NIH Director's Blog. Each type of neurofibromatosis has different signs and symptoms, affects people at different ages, and requires different treatments. Learn about our expanded patient care options and visitor guidelines. Neurofibromatosis Type 2 (NF2) is less common and more likely to be diagnosed in early adulthood. Other tumors can form in the brain and along the spine, causing headaches, sensory problems, and muscle weakness. Watch how the team at the Johns Hopkins Comprehensive Neurofibromatosis Center worked with Hannah and her family to give her the outcome of a lifetime. Duke neurofibromatosis experts provide comprehensive medical and surgical care to children, adolescents, and adults with all forms of neurofibromatosis. Tumors can form along nerves near the brain, spine, and peripheral nerves and can cause debilitating pain. The Johns Hopkins Comprehensive Neurofibromatosis Center is one of only a handful of centers in the world helping patients with neurofibromatosis 1 (NF1), neurofibromatosis 2 (NF2) and schwannomatosis. The first signs may be light brown spots on the skin (called café au lait spots) or freckles in the armpit, or bone deformities. The Johns Hopkins Comprehensive Neurofibromatosis Center is part of a national and international collaboration of medical centers and providers seeking to find the best treatments for patients and to advance research. After graduating from high school, Hannah and her parents learned that the tumor had become cancerous. Read more about the research. Find one near you. To learn more, please view our Privacy Policy, Drug Discovery Initiative Registered Reports (DDIRR), Drug Discovery Initiative - DELopen Awards (DDI-DEL), NF Workshops, Partner Meetings and Hackathons. Please note visitor restrictions are in place. hradtke@ctf.org The Neurofibromatosis Clinic Network (NFCN) was established by the Children’s Tumor Foundation in 2007 to standardize and raise the level of neurofibromatosis clinical care nationally and integrate … The clinic is designated as an affiliated clinic of the Children’s Tumor Foundation. Although neurofibromatosis has no cure, we offer the highest level of comprehensive, specialty care and patient education to reduce symptoms and improve your quality of life. Care providers at the Johns Hopkins Comprehensive Neurofibromatosis Center are part of one of the largest brain and peripheral nerve tumor centers in the world. We are also one of a small number of U.S. hospitals verified as a Level I children's surgery center by the American College of Surgeons. Please check your filter options and try again. Contact us or find a patient care location. Applications are reviewed and accepted or declined by the CTF Clinical Care Advisory Board based on several factors including NF expertise, patient volume, multidisciplinary approach, research support and connections with CTF. People with this type of neurofibromatosis require ongoing monitoring and treatments from multiple specialists. If you have trouble logging in, have questions about how to use Duke MyChart, need more information about For assistance with making an appointment, please contact the Johns Hopkins Comprehensive Neurofibromatosis Center at 410-502-6732. Related to her diagnosis of neurofibromatosis type 1, Hannah had a complex plexiform neurofibroma (tumor) growing in her chest since she was 18 months old. ​Once a clinic is accepted as a recognized NFCN site, the clinic submits an annual report at the end of each calendar year.

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