Connective Issues Spring 2024

Living Better with Marfan, LDS, and VEDS Around the World: The Foundation’s Outreach to the Global Community

This year, we are taking our one-day symposiums to Europe with partner organizations to help empower people living with Marfan, Loeys Dietz, and VEDS outside the United States’ borders. While our global community always has access to our virtual programming, such as webinars and online support groups, an in-person educational event provides the opportunity for connecting with others – both for laypeople and experts. Our one-day Symposia on August 25 in Oslo, Norway, and August 31 in London, England, feature medical experts from Europe and include members of the Foundation’s Professional Advisory Board. Anyone from around the globe is invited to make the trip. Registration is required, but there is no fee. Details can be found at Marfan.org/ international . “We are proud to collaborate with The Marfan Foundation to host the international patient day in London,” said Jared Gri ffi th, Founder and CEO of Annabelle’s Challenge, the leading charity for VEDS in the UK. “This event is a unique opportunity for patients and families who are touched by VEDS, Loeys-Dietz, and Marfan to meet others with these conditions, share experiences, and form lasting friendships.” “We at the Marfan Trust are excitedly anticipating our joint in person patient symposium with the Foundation,” said Victoria Hilton, who handles communications and the helpline for the organization.

“This rare global gathering of like-minded charities and medical experts collaborating in perfect partnership will empower patients with the most up-to-date advice, while o ff ering a chance for people to mix, mingle, and find friendship.” These Symposia in Europe occur the same week as researchers on aortic disease gather in Norway for Tromsø Aorta 2024, a combined meeting of the GenTAC Alliance, a division of The Marfan Foundation, and IRAD, the International Registry of Acute Aortic Dissection. Learn more at Tromsoaorta2024.com . Foundation Expanding Spanish-Language O ff erings The Foundation is planning a Spanish-Language Symposium, “Living Better with Marfan, Loeys-Dietz, & VEDS” on October 26 in Puerto Rico. The speakers are from the U.S. mainland and Puerto Rico. Like our other symposia, this event will arm people with the information they need to better take care of themselves and their loved ones and give them the opportunity to talk with medical experts and other people on similar medical journeys. Registration is coming soon.

Save the Date: Fourth Spanish-Language Summit is scheduled for January 25, 2025. Registration for this virtual educational event is coming this Fall.

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