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Stories of NF: Terri B.

Nov 13, 2018

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.

Call for Applications for the class of 2019 Francis S. Collins Scholars

Nov 7, 2018, Posted in Outside Opportunities, NF1, Science

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.


Nov 7, 2018, Posted in Schwannomatosis, Awareness, Community, Collaborations, NF1, Press Release, NF2, Latest News

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.

Live Posts from the Paris NF Conference

Nov 6, 2018

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.

Stories of NF: Brayden M.

Nov 5, 2018, Posted in Community, NF1, NF Hero

Brayden was diagnosed with NF1 at 9 months. He was non-verbal until 2017.