Introducing the GenTAC Alliance

The GenTAC Alliance is a community of stakeholders committed to advancing our understanding of genetic thoracic aortic diseases and their treatment.

The Alliance builds upon the successes of the GenTAC Registry, which enrolled and followed participants from 2006 to 2016 and seeks to involve a much wider group of stakeholders and be more expansive in scope.

The goals of the GenTAC Alliance are to advance basic, translational and clinical research; educate and support patients, families, and clinicians; and coordinate, facilitate, and encourage the use of biospecimens and data across registries.

COVID-19 Announcements

In light of the current public health crisis due to COVID-19, the GenTAC Alliance is committed to connecting the Genetic Thoracic Aortic disease community to the most up to date research and information. Please see our COVID-19 updates page for information and guidance.

GenTAC COVID-19 Guidance

Tip of the Week

In this week's tip, Dr. Kim Eagle responds to common questions on COVID-19. These include patient concerns about whether there is increased risk of an aortic dissection or rupture in a person who has a genetic aortic condition if they contract COVID-19. He also reminds patients that if they have any symptoms that could be related to an aortic event, they should still visit the emergency room. Finally, he urges everyone to get their flu shot this year.

The GenTAC Alliance is pleased to announce the launch of its new educational website, gentacalliance.org/patient-resources, for patients and families with genetic thoracic aortic disease. Created by the Patients, Families and Clinicians Working Group, the website features easy-to-understand information on the diagnosis and treatment of Marfan syndrome, Loeys-Dietz syndrome, Vascular Ehlers-Danlos Syndrome (VEDS), Familial Thoracic Aortic Aneurysms (TAAs), Bicuspid Aortic Valve (BAV) with anuerysm, Hereditary Thoracic Aortic Aneurysm Disease (HTAD), and Turner Syndrome, among others.

Home Page_Group Shot for "Become a Part of Our Community"

Become Part of Our Community

The Alliance welcomes patients, families, clinicians, researchers, and advocacy organizations to join our community of stakeholders in promoting and enhancing collaboration in education, research, and care with regard to genetically-triggered thoracic aortic disease and related cardiac and non-cardiac complications.

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Recent GenTAC Announcements

The Marfan Foundation and VASCERN, the European Reference Network, are pleased to announce that registration is now open for the first-ever E³ International Summit: Educating, Empowering, and Enriching Our Community. The online event will provide unique access to presentations and live question and answer sessions on Marfan, Loeys-Dietz, VEDS (vascular Ehlers-Danlos), Stickler syndrome, and other aortic conditions. Virtual sessions will take place from August 25 - September 12. Visit the news and announcements page for more information.

News & Events

Check here for updates on the Alliance and global events related to thoracic aortic disease.

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