Persistent left superior vena cava connecting to the roof of left-sided atrium

Get in touch with RARE Concierge.

Contact RARE Concierge

Synonyms: Persistent left SVC connecting to left-sided atrium | Persistent left SVC connecting to the roof of left-sided atrium | Persistent left superior vena cava connecting to left-sided atrium

A rare congenital anomaly of superior vena cava characterized by a persistent left superior vena cava that drains into the left atrium through a direct connection to its roof creating a right-to-left shunt. Patients are at risk of developing chronic hypoxia decreased exercise tolerance cyanosis embolic cerebrovascular events and heart failure.

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 Data version July 2024

Newly diagnosed with
Persistent left superior vena cava connecting to the roof of left-sided atrium?

Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.

Get Concierge Help

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.

Don't see your organization here. Let us know here.

Clinical Trials

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