Familial multiple nevi flammei

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Synonyms: Familial multiple port-wine stains

Familial multiple nevi flammei is a rare genetic capillary malformation disorder characterized by dark red to purple birthmarks which manifest as flat sharply circumscribed cutaneous lesions typically situated in the head and neck region in various members of a single family. The lesions grow proportionally with the individual change in color and often thicken with age.

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 May 2024

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Familial multiple nevi flammei?

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Advocacy Organizations

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 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.