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Valley Children’s Neurocutaneous Syndromes Clinic is now one of only 60 centers in the nation and four in California to join the National Neurofibromatosis Clinic Network.
The Children’s Tumor Foundation grants the network designation to programs that are dedicated to improving clinical care and establishing best practices for children living with neurofibromatosis, which causes tumors to form in the brain, spinal cord, and nerves.
Since its start in 2020, Valley Children’s clinic has served approximately 200 children yearly who are diagnosed with neurofibromatosis. They are provided a thorough evaluation that includes genetics testing, innovative therapies, newly approved medications, and specialized screening services for youngsters who have the early signs and symptoms of associated cancers and lesions.
“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,” Dr. Merveen Appu, Valley Children’s pediatric neurologist and Neurocutaneous Syndromes Clinic director, said in a news release.
“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.”
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