Congenital stenosis of the inferior vena cava
Synonyms: Congenital stenosis of the IVC | Congenital stenosis of the inferior caval vein
A rare vascular anomaly characterized by congenital narrowing of the inferior vena cava mostly at the diaphragmatic level or hepatic segment with or without web formation. Patients may present with deep vein thrombosis below the obstructed segment as well as swelling pain and varices of the lower extremities abdominal pain/varices or hematochezia. Presence of collateral veins between upper and lower segments of the stenosis as well as venous aneurysms are typical associated findings.
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 April 2024
Newly diagnosed with
Congenital stenosis of the inferior vena cava?
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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.