Eighty three advocates from twenty three states descended on Capitol Hill on February 11th and 12th, 2019 to meet with members of Congress and their staff to discuss critical NF research programs. NF Northeast is a proud member of The NF Network Advocacy Program, the leading national Neurofibromatosis advocacy program working to secure federal funds […]
Amelia Nobis is seven years old, a second grader in upstate New York who loves to read, write, dance and sing. She adores her little brother and sister, is excited to learn to play soccer, and loves animals more than just about anything else. But while she sounds like a typical, happy child, life for […]
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.
Michelle Hirsch Donovan : Taking Control of Neurofibromatosis Through Consumer Action This article was featured on the Congressionally Directed Medical Research Program (CDMRP) website. Michelle has tackled NF from every possible angle: a fundraiser, advocate, spokesperson and most important, as Riley’s mother. We thank Michelle, and honor her for all she has done for Riley […]
A group of experts has concluded years of work to develop clinical care guidelines for adults with NF1. The results have been published by Genetics in Medicine, and are officially sponsored by the American College of Medical Genetics. “Care of adults with neurofibromatosis type 1: a clinical practice resource of the American College of Medical […]