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Neurofibromatosis and RASopathy Program
The Neurofibromatosis and RASopathy program is a multidisciplinary clinic of the genetics center at Children’s Hospital of Wisconsin.
We are one of only a few designated centers in the U.S. that provides diagnosis, education, counseling, treatment and care coordination services to children and adults with neurofibromatosis and other disorders related to the RAS pathway.
Conditions we treat
Our specialists diagnose and treat the following conditions:
- RASopathy disorders
- Capillary malformation-arteriovenous malformation syndrome
- Cardio-facial-cutaneous syndrome
- Costello syndrome
- Multiple lentigines syndrome (formerly known as LEOPARD syndrome)
- Noonan syndrome
- Neurofibromatosis and related disorders
- Legius syndrome
- Neurofibromatosis type 1 (NF1) -- read our brochure on teens living with NF1 (PDF)
- Neurofibromatosis type 2 (NF2)
- Tuberous sclerosis complex
Meet our team
Each member of our team – from physicians to nurse practitioners to genetic counselors – shares a vision to provide excellent care to every patient.
Physicians and co-directors:
We offer a team approach to care
Our team comes from a variety of medical specialties and we work together to determine the most effective care and treatment plans for every patient.
When you come for your appointment, we will evaluate and treat you to provide the best, most individualized care. We also will help coordinate care so you can meet with as many of the necessary specialists as possible in one day.
Our team includes specialists in the following areas:
- Social workers
- Speech-language pathologists
- Physical and occupational therapists
- Health care professionals from other specialties, including:
- Plastic surgery
- Renal and nephrology
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 nurse practitioner. 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 about two hours.
A genetic counselor and doctor or nurse practitioner 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 if necessary. We also may have other specialists examine your child to look for potential problems or additional needs related to his or her medical condition.
A follow-up visit usually takes one to three 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
- His or her current Individualized Education Plan, if applicable
- Your health insurance card
Check to make sure we have any necessary medical records, including X-rays and MRI results, from other health care providers. We'll also ask you to fill out several forms in advance and bring them along to your appointment.
Who will my child see?
A genetic counselor and a physician or nurse practitioner will see your child.
Children's Hospital 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:
- Genetic testing
- Eye examination
- Tissue sample of the tumor or skin lesion
We provide education and support along with treatment
Genetic disorders like neurofibromatosis and RASopathy disorders can be complex. Understanding your child's genetic problems in order to provide the best treatment may take some time. We know it can be difficult to wait for answers, and we’re dedicated to making this time as easy as possible.
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.
We will assign a genetic counselor to your family. He or she will be your main point of contact at the program.
To contact your genetic counselor or doctor with questions, call (414) 266-3347.
Location: The Neurofibromatosis and RASopathy Center is located on the second floor of the Children's Hospital of Wisconsin Clinics Building in the Dermatology Clinic.
Find directions and parking information.
You can reach us by phone, email or postal mail. Find our contact information.