In a move aimed at both emphasizing the importance of the Marfan Foundation’s “science arm” and increasing awareness, the GenTAC Alliance – formerly “powered by” the Foundation – has become the Genetic Aortic Network, a Division of the Marfan Foundation.
Dr. Kim Eagle, who leads the Genetic Aortic Network, shared the genesis of the move.
“Beginning in 2006, the Marfan Foundation began working with the National Institutes of Health and top scientists from nine major aortic centers in the United States on a study of nearly 4,000 patients with genetically-triggered aortic aneurysms. Originally called GenTAC (Genetically Triggered Aortic Conditions) that partnership led to a national collaborative effort to expand and speed the progress of discovery surrounding patients with genetic aortopathy,” said Eagle.
“After 13 years of support from NIH, GenTAC and its scientists ‘moved’ to the Marfan Foundation, and the work of connecting scientists from around the world became an even more focused activity of the Foundation. The importance and impact of this has reached new heights, and today GenTAC has been renamed the Genetic Aortic Network, an official division of the Foundation, with a focus on creating and expanding the worldwide scientific effort in genetic aortic diseases,” said Eagle.
Foundation President & CEO Michael L. Weamer expressed enthusiasm regarding the shift. “We are excited to announce that the Genetic Aortic Network has become a division of the Foundation. This ongoing, expanded global collaboration is critically important to the well-being of our community, and we are grateful to have Dr. Kim Eagle, Chair, and dedicated scientists and clinicians leading the way in fulfilling the Marfan Foundation’s vision: quality of life, longevity, and cures for all people with genetic aortic and vascular conditions,” said Weamer
The now Genetic Aortic Network’s working groups make an impact for the genetic aortic and vascular conditions community. The division’s Collaborative Clinical Science Working Group was instrumental in publishing Minimum Core Data Elements for Evaluation of Thoracic Aortic Disease, led by authors Dr. Siddharth Prakash and Dr. Andreina Carbone et al. The paper in JACC helps to standardize data and measurement related to aortic disease – standards that will ultimately positively impact patient care.
Another great example of the ways in which convening scientists through the Genetic Aortic Network can make an important difference is the publication in AHA | ASA Journals of Recommendations for Design, Execution, and Reporting of Studies on Experimental Thoracic Aortopathy in Preclinical Models by the Leducq Network. A number of members of the Genetic Aortic Network’s Basic and Translational Science Working Group collaborated as authors on these recommendations which will ultimately benefit health and quality of life for community members.
Similarly, the 2024 Pediatric Aortopathy statement put forth by the AHA was co-written by numerous Genetic Aortic Network members – many of whom are also members of the Foundation’s Professional Advisory Board. That first-of-its-kind statement will have a lasting, positive impact on pediatric care for young people living with Marfan, Loeys-Dietz, VEDS, and related conditions.
The now Genetic Aortic Network’s Education Working Group has had a banner year of raising awareness, including multiple expert pieces in trade publications including Aunt Minnie, Daily Nurse, Diagnostic Imaging, and Emergency Medicine News. The aim of these pieces is to educate non-expert providers regarding genetic aortic and vascular conditions to aid with earliest possible diagnosis and treatment and to increase positive outcomes in emergencies. These placements have reached roughly 110K people in just a few months.
To learn more about the Genetic Aortic Network and to search its resources which include webinars, on-demand videos, CME information, and best practices for care, visit: geneticaorticnetwork.org.
(Please note, the new name and logos are being phased in on the website and some references to GenTAC may still appear).
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.