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The Marfan Foundation Adds the GenTAC Alliance to its Family

The GenTAC Alliance, the community of stakeholders committed to advancing the understanding of genetically induced thoracic aortic diseases and their treatment, will be powered by The Marfan Foundation beginning October 1, 2020.

The GenTAC Alliance was initiated in 2017 to harness the synergy and collaborations created by the GenTAC Registry (the National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Related Cardiovascular Conditions), which was funded by NHLBI and NIAMS, and enrolled and followed over 3600 patients from 2006 through 2016.

“The members of the GenTAC Alliance, the leaders of our various working groups, and I are unanimous in our excitement about formally joining forces with The Marfan Foundation,” said Kim Eagle, MD, Director, Frankel Cardiovascular Center, University of Michigan, and Chair of the GenTAC Alliance. “The Foundation has been an extraordinarily important partner and supporter of the GenTAC Registry and, subsequently, the GenTAC Alliance over the past 14 years. In fact, the Foundation’s influence in promoting more investment in the science surrounding genetic aortic conditions was at the heart of the GenTAC Registry’s creation by the National Institutes of Health in 2006. How fitting it is now for the GenTAC Alliance to come ‘home’ to become part of the rapidly expanding global vision of The Marfan Foundation as together we seek to improve human health surrounding the many types of genetic aortic disorders.”

The goals of the GenTAC Alliance include:

  • Enhancing the scope of research and expanding collaborations to improve clinical management of genetically induced thoracic aortic diseases.
  • Facilitating effective coordination of the scientific efforts among stakeholders. Addressing unique educational needs of providers, patients, and families with or at risk for genetically induced thoracic aortic diseases.
  • Enlarging the partnerships to include other related registries, professional organizations, and industry partners whose missions include improving the diagnosis and treatment of genetically induced thoracic aortic diseases.
  • Promoting use and sharing of the resources (data, specimens and images) created by GenTAC and related registries to enable and foster new research collaborations and publications.
  • Identifying and tapping new resources to support grant opportunities for research on genetically induced thoracic aortic diseases.

“The goals of the GenTAC Alliance align with those of The Marfan Foundation as we work to expand our focus on not only improving the lives of those with Marfan, Loeys-Dietz, and VEDS, but also others with aortic disease caused by genetic factors,” said Cory Eaves, Chair of the Foundation’s Board of Directors. “The Foundation has collaborated with Dr. Eagle on the GenTAC Registry since its inception and looks forward to increasing the impact of research as the Alliance becomes part of our organization.”

The GenTAC Alliance has a number of working groups that lead its efforts, such as basic science, clinical science, biospecimens and data, and patient education. Members of the Foundation’s executive staff are already active members of these groups. The Foundation will add administrative support to help advance the activities of the working groups. Dr. Eagle will continue to serve as the Alliance’s Chair.

In addition to the work done by these groups, the GenTAC Alliance holds a biannual conference, the GenTAC Aortic Summit, to share current knowledge on the scientific underpinnings of genetic aortic disease; to review current best practices related to diagnosis and treatment; and to foster scientific and educational exchange between scientists, clinicians, institutions, organizations, and the general public interested in genetic aortic conditions. The 2020 Summit will be a virtual event in October. Details and registration will be available this summer.

“We are grateful for the confidence that Dr. Eagle has in the Foundation and look forward to collaborating with him in ways that advance the research that will enable those with genetically triggered aortic disease to live longer and better,” said Michael Weamer, President and CEO, The Marfan Foundation.

About The GenTAC Alliance

The goal of the GenTAC Alliance is to continue to harness the synergy driven by the GenTAC Registry, in maintaining and enhancing collaboration of stakeholders to advance scientific discovery and clinical practice, and address patient and provider education needs, with regard to genetically-triggered thoracic aortic disease and related cardiac and non-cardiac complications. It is the intent for the GenTAC Alliance to encompass a much wider group of stakeholders than the previous GenTAC Registry, open to any type of stakeholder with an interest in thoracic aortic conditions, including but not limited to researchers, patients, family members of patients, patient advocacy groups, clinicians, academic institutions, professional societies, and industry organizations. It is anticipated and hoped that the GenTAC Alliance will leverage the resources created through the initial GenTAC Registry, as well as other existing and new registries, to facilitate stakeholder collaboration on publications, foster new research collaborations, and identify and tap new resources to support grant opportunities for thoracic aortic disease.

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About The Marfan Foundation

The Marfan Foundation’s mission is to save lives and improve the quality of life of individuals with Marfan syndrome and other genetic aortic conditions. The Foundation works tirelessly to advance research, serve as a resource for families and healthcare providers, and raise public awareness.

The Marfan Foundation continues to expand to better serve the community affected by genetic conditions related to Marfan syndrome. In October 2019, the Foundation launched The VEDS Movement to provide research, education, and support for the community of people with Vascular Ehlers-Danlos syndrome (VEDS), a genetic condition related to Marfan syndrome. In May 2020, the Foundation announced that the Loeys-Dietz Syndrome Foundation will become a division of The Marfan Foundation, beginning July 1.

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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.

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