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I was diagnosed with NF2 in 1997. I have had 5 surgeries and 2 Gamma Knife procedures, the most recent being in March 25, 2018.
I refuse to be labeled by my condition. I am simply a person who has to go through some unpleasant times.
The Neurofibromatosis Therapeutic Acceleration Program (NTAP) is now accepting applications for the Francis S. Collins Scholars Program in Neurofibromatosis Clinical and Translational Research. The Collins Scholars program brings together a community of exceptionally well-trained clinician scientists who will be leaders in the field of NF1 research.
The Children’s Tumor Foundation (CTF) is proud to announce today the formation of the new European-based medical research NGO, called Children’s Tumor Foundation Europe. The United States based organization, with headquarters in New York City, was founded in 1978 and is the largest nongovernmental funder and catalyzer of neurofibromatosis (NF) research in the world, with its mission to drive research, expand knowledge, and advance care for the NF community. CTF Europe launches today as a partner organization to CTF in the United States.
This year's Joint Global Neurofibromoatosis Conference is a global event attracting more than 800 participants worldwide across a wide range of scientific disciplines, from research and clinical backgrounds, all focused on improving outcomes for patients with neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2) and schwannomatosis. Together with NTAP and REiNS, the Children's Tumor Foundation sponsored this year's conference, and organized it with the European NF Group and Association Neurofibromatoses et Recklinghausen.
It was standing room only in most sessions, and we were there posting live highlights from each day.