Connective Issues Fall 2024

PROVIDING GLOBAL ACCESS to Education and Connection

With the goal of connecting people living with genetic aortic and vascular conditions, their loved ones, health providers, and researchers from around the world, the Foundation hosted its 2024 Global Virtual Conference, June 17-22. “I am so grateful for the Global Virtual Conference, which was a fantastic experience all week long,” said Luke from Liverpool, England. “As someone whose health issues would make it practically impossible to travel to and attend a conference in person right now, this has been a real lifeline for me and I’m sure many others too.” More than 1,700 people from 56 countries registered for the 5-day event which o ff ered participants opportunities to learn about research updates, medical management, and mental health from healthcare experts. Attendees were also encouraged to connect with others through personal stories, support groups, and interactive sessions. Marta from Lisbon, Portugal, who has Loeys-Dietz syndrome as do her daughter and father, was able to learn more about her condition due to the easy virtual access. Many healthcare providers in Marta’s region have limited knowledge of Loeys-Dietz. Attending the Virtual Conference sessions armed her with more information to discuss with her doctors, adding to the “briefcase of Foundation documents” she carries to her appointments. “I try to search, understand, and know a little bit more

because every day we are facing challenges,” said Marta. “I found this conference very interesting, and I’m still watching every session recorded, so I can review and understand. If I had to go to the U.S. to attend [Conference], I wouldn’t beable to fi nancially or because of my work.” In addition to sessions that spanned Marfan, Loeys-Dietz, and VEDS, interests and concerns like aging, navigating health insurance, mental health, and more, Virtual Conference also o ff ered condition-speci fi c sessions as well as programming for teens and children. Support Groups provided opportunities for a deeper understanding and connections, and Community Chats allowed participants to explore and share similar interests. The event culminated in a Victory Party to celebrate community.

July 10-13, 2025 The 2025 Conference and Health Fair will take place in person July 10-13 in downtown Atlanta, Georgia. Watch for details coming soon!

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