More than two decades after Loeys-Dietz syndrome (LDS) was first identified, an updated management primer is redefining how clinicians understand and care for the condition.
The recommendations in the original LDS primer, published in 2014, helped establish basic standards of care for what was still considered a newly recognized connective tissue condition. At the time, the guidance was highly focused on one thing: preventing catastrophic aortic events.
Join the effort to make a difference! Help raise awareness for Loeys-Dietz Syndrome by asking your state and local government to proclaim March as Loeys-Dietz Awareness Month. Together, we can foster understanding, encourage research, and create a more informed and compassionate community. Take action today—your voice matters!
Read MoreCo-presented by our friends from Annabelle’s Challenge, Marfan Trust, The Aortic Dissection Charitable Trust, and Terumo Aortic, our inaugural London symposium brought together about 200 people interested in hearing from the experts and improving quality of life.
Read MoreCo-presented by our friends from Annabelle’s Challenge, Marfan Trust, The Aortic Dissection Charitable Trust, and Terumo Aortic, our inaugural London symposium brought together about 200 people interested in hearing from the experts and improving quality of life.
Read More“The Marfan Foundation and it’s GenTAC Alliance, coupled with the 60 centers in the International Registry of Aortic Dissection, are working together to speed discovery in the treatment of Marfan Syndrome, the Loeys-Dietz family of aortic disorders, vascular EDS, and related conditions. The future is bright!” said Eagle.
Read MoreNo need for FOMO! The Marfan Foundation just announced a preview of its 2024 events.
Read MoreDuring Mental Health Awareness Month (and every day!), we’re here to help empower you to live your best life through self-care and a focus on well-being.
Read MoreNo need for FOMO! The Marfan Foundation just announced a preview of its 2024 events.
Read MoreStacey Watson has been selected by The Marfan Foundation to join its team as Director of the Loeys-Dietz Syndrome Foundation, a division of The Marfan Foundation. Stacey is also a member of the Loey-Dietz community.
Read MoreIn this two-minute video, Dr. Kim Eagle talks about the three things he wishes every emergency department caregiver knew about aortic emergencies. Please share with the healthcare providers in your life!
Read MoreWe are pleased to share that we recently reached an agreement to return to Atlanta for an in-person Conference July 10-13, 2025 which will again be hosted by our friends at Children’s Healthcare of Atlanta and Emory at their new medical campus.
Read MoreThe Marfan Foundation has awarded its largest research grant in history, the Everest Award, as well as $600,000 in other new grants to physicians/scientists as part of its Research Grant program, bringing current total grant funding to $1,285,500.
Read MoreNew guidelines for the diagnosis and management of aortic disease were published yesterday in the Journal of the American College of Cardiology and Circulation. These guidelines, which were created by a team of medical experts on behalf of the American College of Cardiology and American Heart Association, provide recommendations on the diagnosis, evaluation, medical therapy, endovascular and surgical intervention, and long-term surveillance of people with aortic disease based on evidence available in the literature and, in some instances, based on expert consensus opinions.
Read MoreA meta-analysis of seven global clinical trials with data from 1442 participants with Marfan syndrome has been completed and published today in The Lancet. The primary aim of the meta-analysis was to estimate the effects of angiotensin receptor blockers (ARB) and beta-blockers on the rate of aortic root enlargement patients with Marfan syndrome.
Read MoreThe Marfan Foundation is pleased to name Angela Crist as the director of its new Loeys-Dietz Syndrome Foundation division. Angela will play a direct role in enhancing the programs, services, and support provided for the Loeys-Dietz syndrome community.
Read MoreThe Marfan Foundation, which saves lives and improves the quality of life for people with Marfan, VEDS, Loeys-Dietz, and other genetic aortic conditions, is expanding with a new division dedicated to programs and support services for those affected by Loeys-Dietz syndrome. The Loeys-Dietz Syndrome Foundation will officially become a division of The Marfan Foundation on July 1, 2020.
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