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
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 […]
Gene Therapy paper published in NATURE
Authors: Sherif G. Ahmed, Abdelanabi Ahmed, Mohamed Doha, Gary J. Brenner “Schwannoma gene therapy by adeno-associated virus delivery of the pore-forming protein Gasdermin-D” Abstract Schwannomas are peripheral nerve sheath tumors associated with three genetically distinct disease entities, namely sporadic schwannoma, neurofibromatosis type-2, and schwannomatosis. Schwannomas are associated with severe disability and in cases lead to […]
Marker for skin tumors has been found
“For the first time we have a mouse model that develops different types of neurofibromas inside the body and on the skin, just like in humans. Because of this model, we now know the exact origin of these two types of tumors. If you know where the tumor begins, and you know the end […]
Kim Bischoff, Consumer Representative for NF on the CDMRP Panel
Kim Bischoff, Executive Director of the NF Network, is a member of the Integration Panel for the Neurofibromatosis – Congressionally Directed Medical Research Program (CDMRP) through the Department of Defense. Watch the video below as Kim shares her experiences as a mother and as an advocate.
