About CHoR's neurofibromatosis program
Our multidisciplinary team works together to diagnose, treat and support patients with neurofibromatosis types 1 and 2. In addition to providing high-quality multispecialty medical care for this genetic condition, we have a compassionate psychosocial team that supports our patients’ emotional and educational needs.
NF occurs in one in every 3,000 people and affects millions worldwide often with multisystem involvement, which is why finding a team with providers from multiple specialties who are familiar with this condition is important to ensure your child gets the care they need.
Why choose CHoR for NF care?
- We have the first and only Pediatric NF clinic in Virginia
- We are members of the Children’s Tumor Foundation’s NF clinic network
- Our comprehensive care includes a core team made up of geneticist, oncologist, neurologist, otolarygologist and genetic counselor. Additional pediatric specialists are consulted depending on the specific needs of your child.
- By providing social, emotional and mental health support – we treat the whole child and family – not just the illness.
Conditions we treat
Diagnosing and treating neurofibromatosis
How is it diagnosed?
Only a trained health care professional who understands this complex condition can make a clinical diagnosis of NF.
Receiving a diagnosis of NF can be overwhelming – but you are not alone.
Newly diagnosed with NF? Access these educational resources
Treatment and care
We will work together to create a unique treatment plan and provide coordinated care throughout childhood – until your child turns 22. We can help transition your child’s care to an adult NF provider when the time is right.
Treatment options might include:
- A medicine taken by mouth called Kesolugo, which is sometime referred as MEK inhibitor (MEKi), in plexiform neurofibroma
- ENT and plastic surgeons for resecting plexiform neurofibroma in the face and neck area
- Orthopedic care to correct spinal curve (scoliosis) and other bone anomalies
- Neurosurgery for brain and spine tumors
- Neuropsychology testing for early diagnosis and intervention of ADHD and learning disability (LD) related issues
Long-term follow-up care is managed through clinic visits at least once a year. Some patients with more advanced symptoms might need to be seen on a more regular basis.
Multispecialty care team
Our neurofibromatosis program includes pediatric specialists from many disciplines. They work together as a team to provide comprehensive, coordinated care in the areas of:
Treatment for patients diagnosed with NF extends beyond medical care. Our team includes education specialists, emotional and mental support and more. All with one goal in mind: to give your child the best possible care.