Bockenheimer syndrome

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Bockenheimer syndrome

Synonyms: Genuine diffuse phlebectasia

A rare vascular anomaly characterized by congenital progressive circumscribed venous malformations (phlebectasias) primarily involving the upper and/or lower extremities either on one side or bilaterally. The malformed vessels are visible beneath the skin. Veins of all sizes are affected. Pain swelling muscle wasting and ulceration may occur.

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 March 2024

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Bockenheimer syndrome?

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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.

Clinical Trials

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