Port-wine nevi-mega cisterna magna-hydrocephalus syndrome

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Port-wine nevi-mega cisterna magna-hydrocephalus syndrome

Synonyms: Nova syndrome

A rare developmental defect during embryogenesis syndrome characterized by a glabellar capillary malformation congenital communicating hydrocephalus and posterior fossa brain abnormalities including Dandy-Walker malformation cerebellar vermis agenesis and mega cisterna magna. Seizures are occasionally associated. There have been no further descriptions in the literature since 1979.

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.

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Advocacy Organizations

Project FAVA

Project FAVA is a 501(c)(3) non-profit patient advocacy group that promotes awareness of fibro-adipose vascular anomalies, educates patients, their families, and the global community, and provides helpful resources to those with FAVA. Project FAVA also advances research to move the needle towards more effective and less invasive treatment options for FAVA patients.

Collaborative Research Advocacy for Vascular Anomalies Network (CaRAVAN)

As the research-based umbrella organization for all vascular anomalies, we are on a mission to develop a unified network of patients and their families, advocates, researchers, and clinicians who influence research from initial concept and design to patient care delivery

Clinical Trials

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