Loeys-Dietz syndrome (LDS) is a genetic disorder that affects the connective tissue in the body. The disorder was first observed and described by Dr. Bart Loeys and Dr. Hal Dietz at the Johns Hopkins University School of Medicine in 2005.
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Many individuals with Loeys-Dietz syndrome (LDS) have gastrointestinal issues.
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These Frequently Asked Questions (FAQ) are a compilation of questions we commonly receive through our support groups and Help Center. Each answer has been carefully reviewed and provided by our expert team, including our Chief Science Officer, Help and Resource Center Director, LDS Director, and Dr. Hal Dietz.
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“I was at work, and I got the call from the nurse practitioner at the surgeon’s office to say, you know…we got the results, and…you do have Loeys-Dietz,” he recalled. George, at just 45 years old, had several diagnoses, catching the attention of his physician. During the appointment, George could tell providers were suspicious that larger medical issues were in play.
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Started in 1992, the Foundation’s Help & Resource Center reaches more than 5,000 people around the world via our websites, emails, and one-on-one phone calls. Our registered nurses, Director Stephanie Amdur-Clark, MSN, RN, NP, and Janice Petrella Lynch, MSN, RN, answer a variety of medical questions from the community. Help Center Manager Kathleen Bolton offers Spanish-language services to our community. The team put together the most common questions they receive at the Help & Resource Center and their answers.
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Three symposiums were held this autumn geared toward helping community members connect with one another and with the experts. The events in Puerto Rico, near Boston, and in New Jersey gave attendees the chance to hear expert lectures, ask questions, and spend informal time together at Creating Connections luncheons, as well.
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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!
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In 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.
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This 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.
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“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.”
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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.
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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.
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“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.
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In 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.
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