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Hoag Hosts National Marfan Conference

Hoag’s Jeffrey M. Carlton Heart & Vascular Institute is hosting The Marfan Foundation’s E3 Conference: Educating, Empowering, and Enriching Our Community on July 7-10, 2022, in Newport Beach.

Bringing together more than 600 individuals and families with Marfan syndrome, VEDS, Loeys-Dietz syndrome (LDS), and other genetic aortic and vascular conditions from across the U.S. and abroad, the event provides an opportunity to learn about these conditions from leading medical experts, as well as hear about new medical and genetic research.

Marfan syndrome is a life-threatening genetic disorder of the body’s connective tissue that affects the heart and blood vessels, the bones and the eyes. The syndrome impacts about one in 5,000 people, including men and women of all races and ethnic groups.

Hoag is one of only a few hospitals on the West Coast to offer comprehensive and subspecialized care to patients with Marfan Syndrome and related aortic conditions.

“We are honored to partner with The Marfan Foundation to host this year’s conference,” said David Liang, M.D., Ph.D., the director of the Hoag Marfan Syndrome and Related Conditions Program and professor of medicine at Stanford University. “This event is an incredible opportunity for people to network with individuals who have the same or similar conditions, and learn strategies for improving their quality of life. It’s inspiring to see this community come together and support one another.”

The event kicks off with a free health fair on July 7-8 for people who do not have access to quality medical care at home. The health fair gives people who are seeking a diagnosis or have a specific Marfan syndrome, VEDS, LDS, or related condition treatment issue an opportunity to discuss individualized care with medical experts. Individuals interested in attending the health fair can submit an application through The Marfan Foundation’s website for consideration.

General sessions begin on Saturday, July 9, with medical presentations by researchers and physicians who have special expertise in Marfan syndrome, VEDS, LDS and related conditions. They will address a range of medical topics, including new research; aortic and vascular surgery; physical activity; foot and ankle health; and mental health.

After the general session, attendees can attend small-group workshops led by medical professionals to address specific concerns. Workshops continue on Sunday, July 10, with a focus on quality of life issues, coping strategies and peer support for different age groups.

Concurrent teen and children’s programs are designed to specifically address their needs with a focus on education, peer support, and fun, age-appropriate activities, including a special chaperoned trip to Disneyland.

“It’s been three years since our last in-person conference, and we are looking forward to being together again this summer. We are grateful to Hoag Memorial Hospital Presbyterian for their incredible support and for making it possible to hold Ein beautiful Newport Beach, CA,” said Michael Weamer, president & CEO, of The Marfan Foundation. “Hoag’s Marfan Syndrome and Related Conditions Program is a leader in treating those in our community, and we could not have a better partner. Attendees can expect to learn directly from medical experts at Hoag, as well as from our Professional Advisory Board of experts on Marfan, LDS and VEDS. And the opportunity to again connect in person with community is truly priceless.”

Registration is $400 per adult for the entire event if registered by May 31. Children and teens are free with a registered adult.