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.
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
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.
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.Learn More
Aortic Disease Awareness Week 2020: September 19-26
This year, Aortic Disease Awareness Week was expanded from Aortic Disease Awareness Day to put an enhanced focus on this potentially life-threatening condition. While the passion of the medical community and patient community remains the same, the initiative had a different look this year due to the pandemic. Click below to view the full article.Click to view full article
Check here for updates on the Alliance and global events related to thoracic aortic disease.
Find the latest research regarding thoracic aortic disease.
Learn about GenTAC related patient registries and their work.