Center for Excellence in Care in Neurofibromatosis at UF About us

The Center for Excellence in Care in Neurofibromatosis at UF HEALTH provides comprehensive and exceptional care for patients and families affected with NF. We are designated clinic as a member of the NFCN (Neurofibromatosis Clinical network). We are also members of the NF Foundation and Network.

About Neurofibromatosis

Mission of the Neurofibromatosis Center

Neurofibromatosis (NF) is a set of complex genetic disorders that can affect almost every organ system, causing a predisposition for tumors to grow on nerves in the brain and throughout the body.

NF Brain scan

What is a Neurocutaneous Syndrome?

A broad term for a group of neurologic (NEURO – brain, spine, and peripheral nerve) disorders that involve other parts of the body, and prominently the skin (CUTANEOUS). These diseases are lifelong conditions that affect the nervous system and other organ systems and require comprehensive evaluation and follow up by expert physicians.

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About US

neurofibromatosis Clinical Trials

The Neurofibromatosis Center at UF is now a member of NFCN network.

Map of Neuromedicine Hospital

To Download our Brochure, Click here!

Get Information on the ReNeu NF1 Plexiform Neurofibroma Clinical Trial

Neurofibromatosis News and ANNOUNCEMENTS

Informative Videos

What is Neurofibromatosis?

Neurofibromatosis Type 1 (NF1) is more prevalent than Cystic Fibrosis, Duchenne Muscular Dystrophy, and Huntington’s Disease combined.

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Guidelines for NF1 Patients

Pediatric neurologist, Kaleb Yohay, MD, and director of NYU Langone’s Comprehensive Neurofibromatosis Center, talks about NF 1 Guidelines for Adult patients.

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CCAB Virtual Case Conference

The Children’s Tumor Foundation Clinical Care Advisory Board Virtual Case Conferences.

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SpringWorks Therapeutics and the ReNeu Trial for NF1-Related Plexiform Neurofibromas

SpringWorks is conducting a Phase 2b clinical trial (the “ReNeu trial”) with their investigational MEK inhibitor called mirdametinib in children and adults with NF1-associated plexiform neurofibromas (NF1-PN). During the webinar, people will learn about the differences between NF1 and NF2, what plexiform neurofibromas are, and more about mirdametinib and the ReNeu trial. Speakers include Dr. Mary Smith, Chief Development Officer of SpringWorks and members of her team who are responsible for helping to conduct the ReNeu trial.

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INFER Masterclasses

This is a link to various masterclasses via video presented by INFER (International NF Education Resources). These classes are available in 7 languages.

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