Co-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 MoreIn an effort to prevent others from going through the loss of a loved one, Stephanie and Carlos are committed to doing everything possible to spread awareness.
Read MoreNo need for FOMO! The Marfan Foundation just announced a preview of its 2024 events.
Read MoreVirtual Conference provides the community Dias seeks, she said. “We just need someone to [whom we can] express our ideas, feelings, anxiety about all of this,” said Dias. “It’s important to be able to talk and understand more. It’s makes us part of something.”
Read MoreFor the first time ever we were surrounded by people who understood us.
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 MoreI was diagnosed with Loeys-Dietz Syndrome in March of 2020 at 53 years old. My father died after his second open-heart surgery when he was just 32 years old. Loeys-Dietz had not yet been identified in 1971, but the geneticist believes he suffered from the syndrome as well.
Read MoreI am one of the lucky ones... On November 19th, 2022, I was rushed to Renown Hospital in Reno, NV where I survived an emergent open repair to a ruptured 8.7 cm abdominal aortic aneurysm. I had multiple blood transfusions and coded twice over a few hours. One minute I was working and the next I woke up days later in ICU.
Read MoreOur family discovered our LDS diagnoses in 2015, and while we have been focused on managing our care, we have not really had the opportunity to connect with other members of the LDS community. The stars aligned for us to attend Camp Victory together this October.
Read MoreThanks to the generosity of our supporters, the Foundation awarded five new research grants. These two-year grants include two Innovator Awards and three Victor McKusick Fellowship Awards. The research projects focus on aortic dissection and thoracic aortic aneurysms.
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!
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