Familial cerebral cavernous malformation

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Synonyms: Familial brain cavernous angioma | Familial cerebral cavernoma | Hereditary brain cavernous angioma | Hereditary cerebral cavernoma | Hereditary cerebral cavernous malformation

A rare capillary-venous malformations characterized by closely clustered irregular dilated capillaries that can be asymptomatic or that can cause variable neurological manifestations such as seizures non-specific headaches progressive or transient focal neurologic deficits and/or cerebral hemorrhages.

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 June 2024

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Familial cerebral cavernous malformation?

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Advocacy Organizations

Alliance to Cure Cavernous Malformation (formerly Angioma Alliance)

It is our mission to inform, support, and mobilize those affected by cavernous malformation and drive research for better treatments and the cure. We do this by developing and executing strategic, creative, high-return interventions as a model for rare diseases.

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

Project CASK

VISION Project CASK believes in a world free of the life limitations and debilitating effects of CASK gene disorders. ​MISSION To accelerate breakthroughs in research to develop treatments and a cure for CASK gene disorders. ​VALUES Collaboration. Transparency. Urgency.

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.

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Clinical Trials

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