Other nf resources

NF Organizations

 

The Children's Tumor Foundation is a national NF organization that upholds the mission to drive research, expand knowledge, and advance care for the NF community. They offer resources that include brochures and fact sheets on info for educators, info for navigating a new diagnosis, and more.

The NF Network is a non-profit organization founded in 1988 by a group of people who were in some way affected by neurofibromatosis. They are a national organization that advocates for federal funding for NF research and builds/supports NF communities. 

The Acoustic Neuroma Association is a national NF organization that upholds the mission to provide resources for the acoustic neuroma community by informing, educating, and supporting those affected by acoustic neuroma brain tumors.

Neurofibromatosis Midwest is a non-profit organization dedicated to the increasing number of men, women, and children challenged by neurofibromatosis.They work to educate, comfort, improve clinical care and fund research for treatments and a cure. They offer online resources and support the following areas: Illinois, Wisconsin, Indiana, Iowa, Kentucky, and the eastern half of Missouri.

Part of the National Neurofibromatosis Network organization, NF Central Plains is a nonprofit organization that  provides information and support to people with neurofibromatosis (NF), their families, and anyone interested in the disorder. They offer online resources and support the following areas: Kansas, Western Missouri, Oklahoma, Nebraska, and Colorado. 

NORD is a non-profit advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

Clinical Trials & Research

 

ClinicalTrials.gov, within the NIH U.S. National Library of Medicine, is an online database of both publicly and privately funded clinical studies that are available to participate in around the world.

The NF Clinical Trials Consortium conducts research to help improve the lives of persons with NF. The NF Clinical Trials Consortium currently consists of 13 recruitment sites, 8 collaborating sites, and an Operations Center at the University of Alabama at Birmingham. Their sites are located in the following areas: Chicago, IL; Boston, MA; Sydney, Australia; Los Angeles, CA; Washington, DC; Cincinnati, OH; Indianapolis, IN; Baltimore, MD; Rochester, MN; Bethesda, MD; New York, NY; Birmingham, AL; Chicago, IL; Philadelphia, PA; Salt Lake City, UT; St. Louis, MO; Atlanta, GA; Dallas, TX; Melbourne, Australia; Minneapolis, MN. 

The National Cancer Institute is the federal government's principal agency for cancer research and training. Clinical trials take place at the NIH Clinical Center in Bethesda, Maryland.

The NF Registry is a database that gathers information and the effects of NF1, NF2 and Schwannomatosis from individuals affected by those diagnoses. The information provided helps cultivate important information for NF researchers.

St. Jude Research Hospital provides cancer treatment where no child is denied treatment based on race, religion, or ability to pay. They offer clinical trials where they are committed to translating discoveries in the laboratory into innovative clinical trials for childhood cancer and other life-threatening diseases. They offer studies is various areas such as Brain Tumors, Solid Tumors, Lymphomas, and more. 

The Cancer Predisposition Program within St. Jude Children’s Research Hospital helps to evaluate and care for children who have an increased genetic risk to develop cancer. Their team of doctors and researchers work to find new and better ways to help families who have a higher chance than normal to develop cancer.