In this section
Genetics and genomics
- About medical genetics
- Programs and services
- Genomic Medicine Program
- Hereditary Disorders of Connective Tissue Program
- Lysomal Storage Diseases LSD Program
- Neurofibromatosis and RASopathy Program
- Phenylketonuria PKU Program
- Undiagnosed and Rare Disease Program
- Additional resources
- Patient stories
- Become a patient
- Genetic contact us
- Locations
- Our specialists
- For medical professionals
Neurofibromatosis and RASopathy program
The Neurofibromatosis and RASopathy program is a multidisciplinary clinic of the genetics center at Children’s Wisconsin.
We are a member of the Children’s Tumor Foundation NF Clinic Network and provide diagnosis, education, counseling, treatment and care coordination services to children and young adults with neurofibromatosis and other disorders related to the RAS pathway.
Conditions we treat
Our specialists diagnose and treat the following conditions:
- Multiple café-au-lait spots
- Neurofibromatosis and related disorders
- Legius syndrome
- Neurofibromatosis type 1 (NF1)
- NF2-related schwannomatosis (formerly neurofibromatosis type 2 (NF2)
- LZTR1- and SMARCB1-related schwannomatosis
- RASopathy disorders
- Cardiofaciocutaneous (CFC) syndrome
- Costello syndrome
- Noonan syndrome
- Noonan syndrome with loose anagen hair
- Noonan syndrome with multiple lentigines (formerly known as LEOPARD syndrome)
- Tuberous sclerosis complex (TSC)
Meet our team
Genetics physician and director
Dermatology physician
Genetics advanced practice providers
Genetic counselors
Clinic coordinator
- Katie Knaebe, RN
NF Midwest conducted an interview with our team for their Faces of NF Care series. Please visit the link below to see the video to learn more about our clinic and NF care.
We offer a team approach to care
When you come for your child’s appointment, we will evaluate and treat your child to provide the best, most individualized care. Our clinic works closely with many specialties. Our team acts as a hub to connect your child to the team members needed to provide comprehensive care.
Our team collaborates with specialists in the following areas:
- Audiology
- Cardiology
- Endocrinology
- Gastroenterology
- Neurology
- Neurosurgery
- Oncology
- Ophthalmology
- Orthopedics
- Physical and occupational therapy
- Plastic surgery
- Renal and nephrology
- Social work
- Speech-language pathology
What happens at a clinic visit?
During your first visit to the Neurofibromatosis and RASopathy Program, your child will see a genetic counselor and doctor or advanced practice provider. At that appointment, we will:
- Record a detailed medical and family history
- Perform a physical exam
- Discuss the results with you and answer your questions
The first visit usually takes one and a half hours.
Follow-up care
A genetic counselor and doctor or advanced practice provider will continue to see your child during follow-up visits. At each visit, we will update medical and family history information and perform additional physical exams. Your child may also see a dermatologist to evaluate and address concerns related to the skin.
A follow-up visit usually takes one to one and a half hours, depending on the number of health care providers scheduled to see your child.
After the clinic visit, we will send a copy of the clinic notes with our results and recommendations to your child’s primary care doctor.
Preparing for a clinic visit
To make the most of your time at appointments, we recommend that you bring the following with you:
- A list of the medications your child takes or the medication containers
- Your health insurance card
- A list of questions or concerns you'd like to address at the appointment
- Pertinent family history information
- Pertinent genetic testing results for your child or family members
We may ask for your help gathering medical records, such as MRIs, X-rays, or previous genetic testing.
Who will my child see?
A genetic counselor and a physician or advanced practice provider will see your child.
Children's Wisconsin is a teaching hospital, and many of our specialists train other doctors to care for kids. In addition to your child's main health care providers, you may see the following:
- Medical students who are training to be doctors
- Graduate students who are training to be genetic counselors
- Residents who are doctors in specialty training
- Fellows who have completed a residency and are training in another specialty
No matter who takes part in your child’s care, you can rest assured knowing that your child's main health care providers will supervise the care each person provides for your child.
Will my child need tests?
To help us understand your child’s genetic disorders, we may need to perform some tests. These tests may include:
- Echocardiogram
- Eye examination
- Genetic testing
- MRI
- Tissue sample of a tumor or skin lesion
- Ultrasound
- X-ray
We provide education and support along with treatment
Genetic disorders like neurofibromatosis and RASopathy disorders can be complex. It can take time to understand your child's genetic differences. We will partner with you to develop both understanding and a treatment plan that suits your child's needs.
This is our commitment to your family:
- Education. Our team will review the symptoms of your child's condition with you. We will provide written information about the condition whenever possible.
- Support. We will help you cope with your child's condition. We will be available for questions and support.
- Medical care. We will discuss our medical care recommendations with you. Together, we'll address any questions or concerns you may have to help ensure good quality of life for your child and family. We will work with you and your child on a regular basis.
- Coordinated care. Our team will partner with your child's primary care doctor or other specialists to coordinate care and manage health problems.
Questions? We can help.
Please contact the clinic at (414) 266-3347 with questions about our clinic and program.
Established patients may call clinic or send a MyChart message to their health care provider or genetic counselor.
Location: The Neurofibromatosis and RASopathy Center is located at the Milwaukee Campus of Children’s Wisconsin. The clinic meets on the second floor of the Craig Yabuki Tower in the Multidisciplinary Clinic.
Make an appointment
To make an appointment, call our Central Scheduling team or request an appointment online.
(877) 607-5280
Need assistance?
From out of town? The Access Center can provide assistance in coordinating appointments, insurance, etc. Use our online form or call: (414) 266-6300.