Full NF2-related schwannomatosis

Get in touch with RARE Concierge.

Contact RARE Concierge

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.

Reference: Access aggregated data from Orphanet at Orphadata.

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.

Get Concierge Help

Advocacy Organizations

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

Clinical Trials

For a list of clinical trials in this disease area, please click here.