Paper published by Orphanet Journal of Rare Diseases addresses gastrointestinal problems associated with NF1. AUGUST 17, 2017 James Radke Neurofibromatosis type 1(NF-1) is most typically considered a rare skin condition, and people with it have multiple benign tumors of nerves and skin (neurofibromas). The most noticeable symptoms is abnormal pigmentation (cafe-au-lait spots) and/or freckling in […]
Latest NFNE Medical & Science News & Information
NF Research in England offers Hope to NF2 Patients
Scientists at the University of Plymouth reveal, for the first time, the role of the cellular prion protein in the development of neurofibromatosis 2 tumors — with potential impact on other cancers, too. Image on left is a schwannoma tumor cell. Credit: University of Plymouth New research published today, 10th July 2017, online in the […]
Development of Genome-Guided Therapeutics for NF Based on Genetic Mutation Subsets
Dr. Bruce Korf, a medical geneticist, neurologist and physician-scientist, directs the University of Alabama NF Program. With more than 25 years of experience in patient care, research and education, Dr. Korf is internationally renowned for his work on NF. Written by Bruce Korf ~ Published: June 26th, 2017 Due in part to information featured […]
Help Spread the Word
NEURO-FIBROMA-TOSIS: Take The Challenge! Neurofibromatosis affects more people than cystic fibrosis and muscular dystrophy combined, yet most people have never heard of it. Many people have trouble pronouncing neurofibromatosis. Every day we are encouraging people to participate in our #TheWordIs campaign to generate more awareness of neurofibromatosis and the people this disorder affects. Our goal […]
NF Patient Survey
Community Consulting Teams of Boston (CCT) is working with Neurofibromatosis Northeast (NFNE) to help understand what we are doing well and how we could improve our support and services to patients and families. CCT is a not for profit organization comprised of business school graduates who are interviewing a broad array of NFNE’s stakeholders including […]
