Researchers at Johns Hopkins and around the world are investigating ways to slow the growth of NF-related tumors and prevent them from forming altogether.
Although there is not yet a cure for either neurofibromatosis or schwannomatosis, some patients may benefit from clinical trials. Follow the link to learn more about the various studies available.
Offered by: University of Colorado AnschutzConducted by: Katelyn Glowinski, genetic counseling student, master’s program This research study is designed to gain a better understanding of healthcare barriers faced by adults with Neurofibromatosis Type 1 (NF1), as well as evaluate any associations between these barriers and your self-reported neuropsychiatric or mental health status. If you join... Read More
Rachel was 13 when she first attended Camp NF. At an age when so much was changing, camp gave her something she deeply needed: the chance to meet other young people who understood life with NF. “NF camp gave me the opportunity to connect with others who had a shared experience and come to understand... Read More
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