About Neurofibromatosis

NF xrays

Center for Excellence in Care in Neurofibromatosis at UF HEALTH

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.

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.

nf brain scan 2

About US

Pediatric Care Team

Contact: Sridharan Gururangan, FRCP, Edin.

Pediatric Hospital Main

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

Shine a Light Walk!

Neurofibromatosis affects millions of people worldwide, but few have heard of it and there currently is no cure. The Shine a Light Walk is a…

shine a light

Upcoming Speakers in NF for 2022

Spring 2022 Dusica Babovic-Vuksanovic, MD Professor, Mayo Clinic – Rochester, MN The research interests of Dusica Babovic-Vuksanovic, M.D…

Speakers on a pole

INFER: MASTERCLASSES IN NF

The Masterclasses will take place online approximately once a month, each on a different topic, and include real-time interaction between the expert…

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Informative Videos

What is Neurofibromatosis?

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

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Guidelines for NF1 Patients

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

Image from video of Dr. Yohay

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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Grand Rounds

Diagnosis and Management of Neurofibromatosis and Schwannomatosis

Presented by Dr. PhiOanh (Leia) NghiemPhu Professor of Clinical Neurology Director of Neuro-Oncology Clinical Service and the Director of the Neuro-Oncology Fellowship Program at UCLA

Dr. Phioanh Leia Nqhiemphu

INFER Masterclasses

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

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Helpful Links

Children’s Tumor Foundation

Neurofibromatosis Consortium