News

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.

Many individuals with Loeys-Dietz syndrome (LDS) have gastrointestinal issues.

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.

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.

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.

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!

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.

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.

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.

“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.

No need for FOMO! The Marfan Foundation just announced a preview of its 2024 events.

Virtual 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.”

During 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.

No need for FOMO! The Marfan Foundation just announced a preview of its 2024 events.

Stacey 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.

We 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.

New 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.

The 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.

The 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.