The NetworkEdge is a timely review providing a summary of recent highlights from NF research and clinical trials. It is sponsored by the NF Network in partnership with NF Northeast. The NetworkEdge is presented in bite-sized pieces, allowing you to easily find and focus on those topics of most interest to you, whether it is […]
Latest NFNE Medical & Science News & Information
Educating your child during COVID-19 Quarantine
NF Northeast Board Chair, Lori Ryan sat down (via Zoom) with the Educational Specialist at Boston Children’s Hospital, Meredith Chambers, MEd to discuss tips on educating your NF Child during this COVID-19 Quarantine. Check it out!
First FDA Approved Therapy for NF
The U.S. Food and Drug Administration has approved Koselugo (selumetinib) for the treatment of pediatric patients, 2 years and older, with plexiform neurofibromas – a type of tumor that occurs in patients with neurofibromatosis type 1 (NF1). Koselugo is a MEK inhibitor which was co-developed by AstraZeneca and Merck & CO. Neurofibromatosis (NF) is a […]
Study to Understand Chronic Pain and Work Barriers in NF Population
Dr. Frank Buono, PhD is an Associate Research Scientist in Psychiatry at Yale School of Medicine. As an individual personally affected by NF2, Dr. Buono has conducted NF research through a DOD-funded study to evaluate whether a mobile phone application can reduce pain in adults with Neurofibromatosis Type 1 (NF1). His new study below focuses on the […]
Health Supervision for Children with Neurofibromatosis Type 1
April 22, 2019 – David T. Miller, MD, PhD, FAAP, Debra Freedenberg, MD, PhD, FAAP, Elizabeth Schorry, MD, Nicole J. Ullrich, MD, PhD,David Viskochil, MD, PhD, Bruce R. Korf, MD, PhD, FAAP Neurofibromatosis type 1 (NF1) is 1 of the most common inherited genetic conditions, affecting approximately 1 in 3000 individuals.1 NF1 is a multisystem […]
