The Neurofibromatosis (NF) Multidisciplinary Program at Riley Children’s Health offers unique treatments dedicated to providing excellent care for adult and pediatric patients with neurofibromatosis and schwannomatosis. As one of the few children’s hospitals in the nation with a multidisciplinary treatment program for NF, we can coordinate multiple services into one appointment for patients with either neurofibromatosis type 1 (NF1) or neurofibromatosis type 2 (NF2).
Neurofibromatosis affects everyone differently. It causes tumors to grow on nerves throughout the body and brain, affecting nearly every body part. It can develop in unexpected ways throughout one’s life. That is why we collaborate with different specialties throughout Riley Children’s Health and IU Health, including neuro-oncology, neurology, neurosurgery, genetics, ophthalmology, otolaryngology, orthopedic and pediatric surgery and neuropsychology.
Diagnosing Neurofibromatosis
Diagnosing Neurofibromatosis
Only a physician can formally diagnose neurofibromatosis type 1, or NF1. To make a diagnosis of NF1, an individual must have two or more of the following:
- Six or more café-au-lait macules (brown skin spots)
- Freckling in the axilla (armpit) or groin
- Two or more neurofibroma tumors of any type or one plexiform neurofibroma (a larger, more extensive tumor)
- Optic pathway glioma (a tumor of the optic pathway in the eye)
- Two or more iris Lisch nodules or choroidal abnormalities (bright, patchy spots in the eye)
- Osseous lesions (bony lesion), such as sphenoid dysplasia (abnormal growth) of the bone behind the eye, or dysplasia or pseudarthrosis of the tibia (long bone in the leg) or other long bones
- A pathogenic NF1 variant revealed by genetic testing
- A parent with NF1 based on the criteria above
Neurofibromatosis type 2, or NF2, is typically diagnosed by a neurologist or geneticist based on the presence of clinical findings documented during a clinical examination, MRI imaging and medical history discussion. While this disorder has been called NF2, NF experts are transitioning to call it NF2-related schwannomatosis. The diagnostic criteria for NF2 include the following:
- Bilateral vestibular schwannomas (affecting both ears)
- Or a first-degree relative with NF2, PLUS:
- Unilateral (affecting one ear) vestibular schwannoma OR
- Any two of the following
- Meningioma
- Glioma (for example, spinal ependymoma)
- Neurofibroma
- Schwannoma
- Juvenile cataracts
- OR unilateral vestibular schwannoma PLUS any two of the following:
- Meningioma
- Glioma
- Neurofibroma
- Schwannoma
- Juvenile cataracts
- OR multiple meningiomas (two or more) PLUS:
- Unilateral vestibular schwannoma, OR
- Any two of the following:
- Glioma
- Neurofibroma
- Schwannoma
- Juvenile cataracts
How does someone develop NF?
How does someone develop NF?
Half of those who develop NF1 or NF2 inherit it from a parent. The other half develop it by chance because of a spontaneous change in a specific gene. Every person affected by NF1 or NF2 has a 50% chance of passing the condition on to their children.
Conditions & Services
Conditions Treated
Our pediatric specialists provide patient- and family-centered care for most related conditions. The links below provide more specific information about some, but not all, of the conditions that we treat.
Services Offered
We offer a number of different Neurofibromatosis Program services. Below are some, but not all, of the services that we provide. If you have a question about a specific service that is not listed here, please contact our program.
Doctors and
Locations
Doctors
4.7 out of 5 stars
(65 ratings)
Score is an average of all responses to care provider related questions on our nationally-recognized NRC Health Patient Experience Survey.
Learn About SurveyPediatric Neurology
317.948.7450
4.8 out of 5 stars
(136 ratings)
Score is an average of all responses to care provider related questions on our nationally-recognized NRC Health Patient Experience Survey.
Learn About SurveyPediatric Neurology
317.948.7450
4.9 out of 5 stars
(32 ratings)
Score is an average of all responses to care provider related questions on our nationally-recognized NRC Health Patient Experience Survey.
Learn About SurveyPediatric Neurosurgery
317.944.6201
4.7 out of 5 stars
(197 ratings)
Score is an average of all responses to care provider related questions on our nationally-recognized NRC Health Patient Experience Survey.
Learn About SurveyNeurology
317.963.7244
Bone Marrow Transplant, Pediatric Hematology - Oncology
317.944.2143
4.8 out of 5 stars
(142 ratings)
Score is an average of all responses to care provider related questions on our nationally-recognized NRC Health Patient Experience Survey.
Learn About SurveyPediatric Neurology
317.948.7450
4.6 out of 5 stars
(52 ratings)
Score is an average of all responses to care provider related questions on our nationally-recognized NRC Health Patient Experience Survey.
Learn About SurveyPediatric Neurosurgery
317.944.6201
4.9 out of 5 stars
(99 ratings)
Score is an average of all responses to care provider related questions on our nationally-recognized NRC Health Patient Experience Survey.
Learn About SurveyPediatric Neurology
317.948.7450Locations
Locations
In addition to our primary hospital location at the Academic Health Center in Indianapolis, IN, we have convenient locations to better serve our communities throughout the state.
Sort through 4 facilities offering Neurofibromatosis Program care by entering your city or zip below.
Patient & Family Resources
Patient & Family Resources
Below is a list of services provided by Riley Children's to help support your child and family through their cancer care with us. These are just a few of the support services provided.
Learn more about our Patient and Family Support Services.
Resources
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With our school program, your child does not have to miss out on important education while receiving treatment.
Related Programs & Departments
Related Programs & Departments
We provide multispecialty care for a number of conditions. Below are links to our related programs & departments.
- Pediatric Audiology & Speech Pathology
- Pediatric Cancer & Blood Disorders
- Pediatric Cardiology
- Children's Clinical Research Center
- Dermatology
- Pediatric Diabetes & Endocrinology
- Herman B Wells Center for Pediatric Research
- Medical & Molecular Genetics
- Pediatric Nephrology & Kidney Diseases
- Pediatric Neurology
- Pediatric Neurosurgery
- Pediatric Ophthalmology
- Pathology & Lab Services
- Pediatric Surgery
- Plastic Surgery
- Radiology & Imaging
Health Professionals
For Health Professionals
Refer A Patient
To refer a patient to the Neurofibromatosis Program, please call 317.944.2143.
Refer A PatientResearch
Riley Children's Center for Cancer & Blood Diseases is affiliated with the IU Health Melvin and Bren Simon Cancer Center, the state’s only National Cancer Institute-designated cancer center for clinical care.
Riley Children’s Health is a member of the Children’s Oncology Group Phase I Consortium. Patients can access the latest clinical trials and leading-edge medications, all while under the care of highly skilled physicians and staff.
Latest clinical trials provide a pathway to novel treatment options
- Exclusive trials available through the NF Clinical Trial Consortium, the NF Clinic Network, the Pacific Pediatric Neuro-Oncology Consortium and the Children’s Oncology Group
Riley Children’s is a high-enrolling site for clinical trials targeting plexiform neurofibromas and malignant peripheral nerve sheath tumors. We also enroll patients in clinical studies to treat vestibular schwannomas.
Education
The Neurofibromatosis Program at Riley Children’s helps train the next generation of pediatric hematologists and oncologists. Pediatric oncology/hematology fellows at the IU School of Medicine learn about the latest advancements in personalized cancer treatment by spending part of their training with our team.