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Your ongoing support has allowed us to take huge steps forward in 2018 in the fight against NF. Your efforts and contributions have been instrumental in advancing neurofibromatosis research, providing hope for the millions worldwide who live with NF, and bringing us ever closer to our shared goal of ending NF forever.
Major Research Funders Join Together to Advance Research into Genetic Disorder
New York/Baltimore/Seattle – The Children’s Tumor Foundation (CTF), together with the Neurofibromatosis Therapeutic Acceleration Program (NTAP) and Sage Bionetworks (Sage), has announced the first-ever open data portal for scientific research results in the field of neurofibromatosis (NF). The NF Data Portal marks the major first milestone in all three organizations’ commitment to the development of the larger NF Open Science Initiative (NF-OSI), which draws experts from across research disciplines and disease areas in order to develop treatments for NF, a genetic disorder which affects 2.5 million people worldwide (1 in 3,000 births), and currently has no cure or effective treatment options.
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.
In May 2018, the NF community gathered in Atlanta, GA for a long weekend of patient engagement training, leadership training, research updates, and patient and family support. We asked two first-time attendees to reflect on their experience.
We at CTF understand that not everyone living with NF is able to be seen by an NF expert on a regular basis or attend NF Forums, symposiums, or conference. With that in mind we are excited to bring you this webinar series!