Neurocutaneous Syndromes Clinic Joins Elite National Network

Patient with Neuro Doctor

Valley Children’s Neurocutaneous Syndromes Clinic is now one of only 60 centers in the country to join the national Neurofibromatosis Clinic Network, established by the Children’s Tumor Foundation. Valley Children’s is the fourth in California with this designation, which is granted to programs dedicated to improving clinical care and establishing best practices for kids living with neurofibromatosis (NF), a condition that causes tumors to form in the brain, spinal cord and nerves.

“When our program launched in 2020, we had ambitious goals in place to benchmark our standard of excellence and ensure the best care for kids in the Central Valley, so it is an honor to receive this designation,” said Dr. Merveen Appu, Valley Children’s pediatric neurologist and Neurocutaneous Syndromes Clinic director. “Our patients with neurofibromatosis undergo surveillance imaging and subspecialty evaluations and have the opportunity to discuss their questions with the appropriate specialist – all here, in one location -– making us a true multidisciplinary clinic and easing the burden of families traveling far for care.”

Neurocutaneous syndromes are rare neurological disorders that can cause tumors to grow anywhere in the nervous system. NF is the most common neurological disorder, caused by a single gene, affecting one in every 3,000 children and leading to a lifetime of medical surveillance and care.

The NF Clinic Network recognizes clinics that provide comprehensive medical care, foster patient education and encourage participation in clinical research trials and the NF registry. Designations are based on several factors, including NF expertise, patient volume, multidisciplinary approach and research support.

Since its inception in 2020, Valley Children’s Neurocutaneous Syndromes Clinic has been the medical home to approximately 200 children with NF each year. Thorough evaluation of any child with known or suspected NF involves a collaboration with genetics for confirmatory testing, available at Valley Children’s, as well as innovative therapies, newly FDA-approved medications and specialized screening services for those with early signs and symptoms of NF-associated cancers and lesions.

“Every day, we look for ways to collaborate across all disciplines to improve the care of our patients and help families in need,” added Dr. David Christensen, Valley Children’s senior vice president and chief physician executive. “Our Neurocutaneous Syndromes Clinic involves neurosciences, genetics, orthopaedics and ophthalmology, and this designation reaffirms the dedication we have to ensuring the best specialized care right here at home.”

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