About Neurofibromatosis
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.
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.
About US
Adult Care Team
Contact: Hans Shuhaiber, MD
Pediatric Care Team
Contact: Sridharan Gururangan, FRCP, Edin.
NF1 Wallace Research Lab
Dr. Margaret Wallace is a Professor in UF’s Department of Molecular Gentics and Microbiology.
neurofibromatosis Clinical Trials
Neurofibromatosis Clinical Trials at UF
The Neurofibromatosis Center at UF is now a member of NFCN network.
To Download our Brochure Click here!
Get Information on the ReNeu NF1 Plexiform Neurofibroma Clinical Trial
Neurofibromatosis News and ANNOUNCEMENTS
NF News Spring 2022 is now online!
The new issue of NF News, the official newsletter of the Children’s Tumor Foundation, is now available! In this issue you will find: CTF’s New…
Interested in Participating in an NF1 Study?
Purpose of Study The purpose of this study is to test the safety and effectiveness of 2 concentrations of NFX-179 gel compared with placebo…
Do you have Cutaneous Neurofibromas on your skin?
Volunteers, aged 18 years and older are wanted for a clinical research study using an investigational topical medication. Must have a clinical…
Informative Videos
What is Neurofibromatosis?
Neurofibromatosis Type 1 (NF1) is more prevalent than Cystic Fibrosis, Duchenne Muscular Dystrophy, and Huntingtons Disease combined.
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.
CCAB Virtual Case Conference
The Children’s Tumor Foundation Clinical Care Advisory Board Virtual Case Conferences.
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.
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
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.
