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 MoreIn Rachel’s mind, being diagnosed with Marfan syndrome never felt like it accurately represented her. She noted that she had physical features that differed from those of people living with Marfan syndrome. Rachel always felt like she was on the outside looking in.
Read MoreThis year, Camp Victory for Kids in Georgia and California, held in July and August respectively, hosted 38 campers, 20 volunteer counselors, five Foundation staff members, and five medical staff of volunteer nurses and medical directors. Through the generosity of our donors, scholarships were provided to half of our campers this year.
Read More“I want to raise awareness,” said Paige. “I just want people to know [about aortic dissection symptoms and risk related to LDS]. I want someone else to have the opportunity that Derrick didn’t.”
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 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.
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