Genetic tests + coordinated care + research = HOPE
Life with an inherited disease sometimes brings unexpected twists and turns. Five-year-old Gus Erickson has navigated the gyrations with the help of Mayo Clinic’s Neurofibromatosis Clinic. Neurofibromatosis (NF) is a genetic disorder that causes tumors to form on nerve tissue.
New research offers hope to neuro-tumor patients
New research could offer hope to the thousands of people affected by Neurofibromatosis 2.
Participate in NF research
Did you know that there are 167 clinical trials for neurofibromatosis (NF) in various stages of completion? People with NF can play a critical role in the development of new treatments and the search for a cure by participating in clinical trials.
Washington U professor receives $3.5M grant
David H. Gutmann, director of the Neurofibromatosis Center at the Washing University School of Medicine in St. Louis, was awarded a $3.5 million grant to study NF1.
Drug shrinks pediatric neural tumors
In an early-phase clinical trial, in most cases, children with neurofibromatosis type 1 and plexiform neurofibromas responded with tumor shrinkage.
Swedish teen walks using 3D printed hip implant
Fanny Fellesen, a Swedish 16-year-old with neurofibromatosis, was told she would never walk again.
Drug shows promise with hearing loss
A drug already in use for some cancers is not only halting hearing loss in some patients, but reversing it.
New drug approved for NF2 treatment
BioXcel announced the U.S. Food and Drug Administration has granted Orphan Drug Designation to BXCL101 for the treatment of Neurofibromatosis Type 2.