Neurocutaneous Syndromes Clinic

(612) 813-7076
(612) 813-6360 (fax)

Children’s Hospitals and Clinics of Minnesota and Gillette Children’s Specialty Healthcare have joined to form the Neurocutaneous Syndromes Clinic Without Walls. This multidisciplinary team offers coordinated care to help families navigate the healthcare system and the often complex care management plan. Patients are seen at Children’s - St. Paul, Children’s – Minneapolis, and Gillette Children’s Specialty Healthcare.


Services

  • Diagnosis, treatment, care coordination, and long term follow-up services for families with children who may be affected by neurocutaneous syndromes
  • Genetic counseling
  • Genetic testing
  • Communication and collaboration with members of the child’s healthcare team, including primary care physicians
  • Assistance with school and insurance concerns

What are neurocutaneous syndromes?

Neurocutaneous syndromes are genetic conditions that are associated with skin abnormalities and neurological differences. Patients seen in this clinic are evaluated for accurate diagnosis and optimal medical management. Up-to-date recommendations are made for long-term care. Genetic testing and counseling is available. Families receive education about their child’s condition and patients receive comprehensive and coordinated care.

Some of the neurocutaneous syndromes seen by clinic providers include:

  • Ataxia telangiectasia (also known as Boder Sedgwick syndrome or Louis Bar syndrome)
  • Cutis marmorata telangiectatica congenita (CMTC)
  • Hereditary hemorrhagic telangiectasia (HHT)
  • Neurofibromatosis, types 1 and 2
  • Schwannomatosis
  • Tuberous sclerosis complex
  • Sturge-Weber syndrome
  • Von Hippel Lindau disease

Contact us

For more information about the Neurocutaneous Syndromes Clinic, call our clinic coordinator Jennifer Reyes House at (612) 813-7076.