Full NF2-related schwannomatosis
Synonyms: Full NF2 | Full neurofibromatosis type 2 | Nonmosaic NF2-related schwannomatosis | Nonmosaic neurofibromatosis type 2
Neurofibromatosis type 2 (NF2) is a tumor-prone disorder characterized by the development of multiple schwannomas and meningiomas.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.
Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http: //www.orphadata.org. Data version September 2023.
Newly diagnosed with
Full NF2-related schwannomatosis?
Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.
We are a non-profit organization (Tax-ID 83-0940046) seeking a cure or preventative treatment for NF2 by vigorously supporting and advancing existing and next-generation biomedical technologies, such as gene therapy and immunotherapy.
Littlest Tumor Foundation
Our mission is to increase understanding of neurofibromatosis (NF), empower affected families, and advance research of preventative therapies.
Being Positioned, Inc.
Being Positioned is a nonprofit organization that seeks to empower and improve the lives of adults living with rare genetic disorders. Our mission is to help individuals discover their purpose through traveling, building community, and creating memorable experiences. We grant all-expenses-paid Journeys (trips) to adults 21+, diagnosed with life-altering rare genetic disorders.
My Faulty Gene
My Faulty Gene is a nonprofit organization which provides information and assistance to any individual whose family medical history suggests genetic testing might be helpful in identifying an increased risk of disease due to a genetic mutation. We believe that everyone in need of genetic testing should have access to it.
My Little Sunshine Foundation
My Little Sunshine is a non-profit foundation dedicated to educating people about the importance of fertility preservation and making fertility resources accessible to all.
Educate and provide resources to POC with Rare Cancers
Help Hope Live
Help Hope Live assists individuals living with catastrophic injuries and illnesses to fundraise toward their medical expenses and related costs.
Moonshots for Unicorns
Curing single-gene disorders
COMBINEDBrain is a consortium for outcome measures and biomarkers for neurodevelopmental disorders. We are collaborating to cure rare, non-verbal brain disorders.
Syndromes Without A Name (SWAN) Australia
Provide information, support and advocacy to families caring for a child with an undiagnosed or rare genetic condition.
For a list of clinical trials in this disease area, please click here.