The Neurofibromatosis (NF) Conference has been organized by the Children's Tumor Foundation (CTF) annually since 1985. With its roots in a small workshop-style gathering of a group called the """"""""NF Consortium"""""""" dedicated to cloning the genes underlying the Neurofibromatoses, the NF Conference has grown to a gathering of three hundred NF researchers and clinicians from around the world. This meeting is recognized as the premier annual gathering of international NF researchers and physicians. Major contributors to this growth are the significant advances made in NF research in recent years and, particularly, recent advances into clinical trials and drug therapy development. In addition, state of-the-art genomic approaches have identified mutations in the NF genes as contributors to numerous types of sporadic cancers, signaling pathways including the Hippo and Ras cascades are implicated in NF, and it is now recognized that mutations in genes along the Ras pathway result in a set of disorders, including NF1, called the """"""""Rasopathies"""""""". Traditionally a forum for research information exchange and consensus building, in recent years the NF Conference is also the principal international forum for reporting on the neurofibromatosis preclinical therapeutic pipeline and the expanding arena of neurofibromatosis clinical trials.

Public Health Relevance

The Children's Tumor Foundation NF Conference has a remarkable presence in the neurofibromatosis community. It plays a lynchpin role in accelerating neurofibromatosis research progress by serving as the premier annual gathering of researchers and clinicians in the neurofibromatosis community. The Conference provides a forum for research information exchange and discussion for neurofibromatosis researchers and clinicians from around the world. It fosters collaboration and consensus building, and has undoubtedly aided in the advances in translational research that have yielded the growing pipeline of NF clinical trials our community has today. Conference attendance has doubled from 120 attendees in 2005 to over 300 attendees in 2011. This has been driven by integration of new signaling pathways into NF research, the appreciation for NF pathways in sporadic diseases, and an expanding pre-clinical and clinical agenda component as the neurofibromatosis field progresses bench to bedside. For over 25 years a neurofibromatosis research meeting has been organized and convened annually by the Children's Tumor Foundation, providing a forum to bring together basic and clinical NF investigators to share the latest research progress and focus on key issues in the NF research landscape. Until 2006 known as the NF Consortium, the meeting was re-branded in 2007 as """"""""The NF Conference"""""""" to increase visibility and expand attendance. The meeting has always included high-profile keynote speakers from NF. Over the past few years, we have increased the presence of high-profile speakers from other areas of cancer research, neuroscience etc., to stimulate ideas and build connections between NF and other disorders. In addition we have elevated the presence at the NF Conference of young NF researchers, many supported by the Foundation's Young Investigator Award program, ensuring platform presentation slots for a proportion of these each year. The NF conference offers a unique opportunity for collaboration and, over the past couple of years has expanded from a largely basic research focus to also become the forum for sharing the latest in NF translational research and pre-clinical and clinical trials. However, even with ths growth from 120 to over 300 attendees, the Foundation has strived to keep an intimate boutique feel to the NF Conference to ensure discussion and interaction. Abstract Books and summary reports from prior NF Conferences can be viewed online at About Neurofibromatosis and Emerging Therapeutics Neurofibromatosis is a group of genetic disorders - NF1, NF2, and schwannamatosis - collectively known as """"""""NF"""""""". NF causes tumors to grow anywhere in the nervous system;and though largely benign, 10-15% will become malignant. Even the benign tumors of NF can cause significant morbidity and even mortality because of their continuous growth and often surgical inaccessibility. NF can also cause bone abnormalities, deafness, blindness, pain, heart defects, and in 60% of cases, learning disabilities. NF affects an estimated 100,000 persons in the US. NF1 is the most predominant affecting 1:3,000 births;NF2 affects 1:25,000 births. NF1 and NF2 are autosomal dominant: fifty percent of new cases arise from spontaneous mutations with no family history of the disorder. Schwannomatosis affects an estimated 1:40,000 births and is not well understood. The genetics and molecular biology of NF1 and NF2 are fairly well understood. Using understanding of signaling defects and molecular changes therapies are being proposed. Understanding of Schwannomatosis is progressing since a candidate gene INI1 was identified. This disorder may also be linked to NF2 and other genes. In 2008, the NF clinical landscape was further expanded with the identification of another NF1-like disorder, Legius Syndrome, associated with a SPRED1 gene mutation on Chr. 15, and with a clinical presentation of """"""""mild"""""""" NF1. There are no effective drug treatments for NF yet, but over the past several years multiple clinical trials have been initiated. Over 25 open NF specific trials are now listed on, funded by the DOD NF Clinical Trials Consortium, the Children's Tumor Foundation;and by additional sources including NIH funds.

National Institute of Health (NIH)
National Institute of Neurological Disorders and Stroke (NINDS)
Conference--Cooperative Agreements (U13)
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National Institute of Neurological Disorders and Stroke Initial Review Group (NSD)
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Morris, Jill A
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Children's Tumor Foundation
New York
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