Neurofibromatosis care at Mayo Clinic

Your Mayo Clinic care team

Mayo Clinic's world-renowned Neurofibromatosis Clinic provides coordinated care for people with this complex condition. Geneticists, adult and pediatric neurologists, neuro-oncologists, radiologists, and neurosurgeons work together to provide exactly the care you need. Genetic counselors, ophthalmologists, orthopedic surgeons, dermatologists, pain medicine experts, and ear, nose and throat specialists are also part of the treatment team.

Mayo Clinic in Rochester, Minnesota, also offers the family-friendly Children's Center for children with neurofibromatosis.

Having all of this subspecialized expertise in a single place, focused on you, means that you're not just getting one opinion — care is discussed among the team, appointments are scheduled in coordination, and highly specialized neurofibromatosis experts are all working together to determine what's best for you.

What might take months to accomplish elsewhere can typically be done in only a matter of days at Mayo Clinic.

Advanced treatment

Mayo Clinic patients have access to the latest imaging and diagnostic tools available, and there's a long history of Mayo Clinic scientists developing cutting-edge technologies for patient care. Mayo Clinic specialists use the full array of genetic, imaging, vision and hearing tests to diagnose neurofibromatosis.

Mayo Clinic specialists also have experience with treatment for severe neurofibromatosis, including surgery, stereotactic radiosurgery, cochlear implants and auditory brainstem implant.

The Neurofibromatosis Clinic also has genetic counselors who can help you make decisions that are appropriate for you and your family in view of risk, family goals, and ethical and religious standards.

Nationally recognized expertise

Mayo Clinic in Rochester, Minn., ranks No. 1 for neurology and neurosurgery in the U.S. News & World Report Best Hospitals rankings. Mayo Clinic in Phoenix/Scottsdale, Ariz., and Mayo Clinic in Jacksonville, Fla., are ranked among the Best Hospitals for neurology and neurosurgery by U.S. News & World Report. Mayo Clinic Children’s Center has again been ranked as the top performing children’s hospital in Minnesota, the Dakotas and Iowa on U.S. News & World Report’s 2017–2018 Best Children’s Hospitals rankings.

Expertise and rankings

Mayo Clinic's neurofibromatosis experts provide comprehensive care for hundreds of people with neurofibromatosis each year.

  • Teamwork. Your treatment is coordinated by a medical geneticist with expertise in neurofibromatosis. The team may involve specialists in child and adolescent neurology, neurosurgery, radiology, ENT, ophthalmology and orthopedic surgery, as needed.
  • The latest techniques and technology. Mayo Clinic specialists use the full array of genetic, imaging, vision and hearing tests to diagnose neurofibromatosis. Mayo Clinic specialists have experience with treatment for severe neurofibromatosis, including surgery, stereotactic radiosurgery, cochlear implants and auditory brainstem implant.
  • Compassionate care. The Neurofibromatosis Clinic has genetic counselors who can help you make decisions appropriate for you and your family in view of risk, family goals, and ethical and religious standards.

Learn more about Mayo Clinic's neurology and neurosurgery departments' expertise and rankings.

Locations, travel and lodging

Mayo Clinic has major campuses in Phoenix and Scottsdale, Arizona; Jacksonville, Florida; and Rochester, Minnesota. The Mayo Clinic Health System has dozens of locations in several states.

For more information on visiting Mayo Clinic, choose your location below:

Costs and insurance

Mayo Clinic works with hundreds of insurance companies and is an in-network provider for millions of people.

In most cases, Mayo Clinic doesn't require a physician referral. Some insurers require referrals, or may have additional requirements for certain medical care. All appointments are prioritized on the basis of medical need.

Learn more about appointments at Mayo Clinic.

Please contact your insurance company to verify medical coverage and to obtain any needed authorization prior to your visit. Often, your insurer's customer service number is printed on the back of your insurance card.

Aug. 11, 2017
References
  1. Ferri FF. Neurofibromatosis. In: Ferri's Clinical Advisor 2016. Philadelphia, Pa.: Mosby Elsevier; 2016. https://www.clinicalkey.com. Accessed Nov. 11, 2015.
  2. Neurofibromatosis fact sheet. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/neurofibromatosis/detail_neurofibromatosis.htm. Accessed Nov. 11, 2015.
  3. Korf BR. Neurofibromatosis type 1 (NF1): Pathogenesis, clinical features, and diagnosis. http://www.uptodate.com/home. Accessed Nov. 10, 2015.
  4. Evans DG. Neurofibromatosis type 2. http://www.uptodate.com/home. Accessed Nov. 10, 2015.
  5. Yohay K, et al. Schwannomatosis. http://www.uptodate.com/home. Accessed Nov. 10, 2015.
  6. Korf BR. Neurofibromatosis type 1 (NF1): Management and prognosis. http://www.uptodate.com/home. Accessed Nov. 10, 2015.
  7. Woodrow C, et al. Neurofibromatosis. Orthopaedics and Trauma. 2015;29:206.
  8. Goldblum JR, et al., eds. Benign tumors of peripheral nerves. In: Enzinger and Weiss's Soft Tissue Tumors. 6th ed. Philadelphia, Pa.: Saunders Elsevier; 2014. https://www.clinicalkey.com. Accessed Nov. 10, 2015.
  9. AskMayoExpert. Neurofibromatoses. Rochester, Minn.: Mayo Foundation for Medical Education and Research; 2015.
  10. Slattery WH. Neurofibromatosis type 2. Otolaryngologic Clinics of North America. 2015;48:443.
  11. Hirbe AC, et al. Neurofibromatosis type 1: A multidisciplinary approach to care. The Lancet Neurology. 2014;13:834.
  12. Flint PW, et al., eds. Stereotactic radiation treatment of benign tumors of the cranial base. In: Cummings Otolaryngology. 6th ed. Philadelphia, Pa.: Saunders Elsevier; 20154. https://www.clinicalkey.com. Accessed Nov. 10, 2015.
  13. Riggin EA. Allscripts EPSi. Mayo Clinic, Rochester, Minn. Sept. 18, 2015.