42 Years of Care and Ensuring No One Fights Alone!


Schwannomatosis International Database

A consortium of medical institutions is collecting limited information on schwannomatosis patients. This includes their symptoms, their management and medication,…

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NF Registry

If you or your child has been diagnosed with neurofibromatosis (NF) please join the NF Registry today. The key to…

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NF1 Washington University Registry

The Washington University Neurofibromatosis (NF) Center has launched a unique internet-based NF1 Registry, which is a 30-minute questionnaire. This questionnaire…

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NF2 Clinical Trial

In 2012 House Research Institute will sponsor a three-year, Phase II clinical trial, evaluating the efficacy of the drug RAD001…

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Plexiform Drug Trial

If you have Type 1 Neurofibromatosis with Plexiform Neurofibromas you may be interested in NF1 Plexiform treatment studies for children…

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Learning Disabilities Trial

The University of Chicago Neurofibromatosis Program (Dr. Tonsgard), and the NF Center at Washington University, St. Louis (Dr. Gutmann) along…

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