Washington University Neurofibromatosis Center

An international leader in research and treatment of neurofibromatosis (NF), the Washington University NF Center unites outstanding basic laboratory and clinical investigators with expert clinicians to provide comprehensive treatment options for children and adults with these complex genetic conditions.

The mission of the Washington University NF Center is to translate groundbreaking research into exceptional patient care. Using an integrated approach, we combine innovative laboratory science with multidisciplinary clinical care and novel complementary care programs. The collective focus of these researchers and clinicians is directed toward developing and optimizing treatments for children and adults with NF.

The Washington University NF Clinical Program at St. Louis Children’s Hospital and Barnes-Jewish Hospital is an internationally-renowned program specifically designed to provide multidisciplinary care for children and adults with NF, bringing together dedicated specialists with extensive experience in NF. With experts in fields as diverse as dermatology, neurology, neurosurgery, orthopedics, oncology, neuropsychology, and endocrinology, these healthcare professionals are able to provide cutting-edge treatments for every facet of NF.

Center investigators employ a wide variety of technologies and approaches to unravel the mysteries of NF, ranging from genomic sequencing and mathematic analyses to behavioral studies and cellular engineering strategies. By leveraging the expertise of a diverse group of laboratory and clinical researchers, we are able to accelerate progress in the field.

Neurofibromatosis Network

The NF Network is a non-profit 501(c)(3) organization and was founded in 1988 by a group of people who were in some way affected by neurofibromatosis. We are the leading national organization advocating for federal funding for NF research and building and supporting NF communities. The NF Network’s goal is to eradicate the health issues, pain, isolation and uncertainty that the diagnosis of NF inflicts. The NF Network provides opportunities for local NF organizations to share experiences. The network is a dynamic and growing open space for shared resources, development of new tools, and creation of innovative programs. It brings together groups from around the country to speak as one voice on national issues.

Children’s Tumor Foundation

From 2010 to 2016, the Children’s Tumor Foundation’s (CTF) primary objective has been to fill the clinical drug development pipeline. We strategically integrated our investments into this clinical pipeline, resulting in substantial accomplishments including the NF Registry, which, with over 8,000 patients thus far, has been utilized 22 times to recruit patients to clinical trials, CTF launched an NF data hub, providing an open access data platform to all and collaborated with the National Institutes of Health (NIH), Congressionally Directed Medical Research Program (CDMRP), and Neurofibromatosis Therapeutic Acceleration Program (NTAP) to build a common grant repository for an easy visualization of the NF funding landscape.

The accomplishments of the past enable us to turn our eyes toward lofty goals. Our strategy for the next five years is to double the speed of clinical therapies to the clinic.We are planning for a future in which there are approved drugs for the treatment of NF.