Know the Signs, Fight for Victory

Living Better with Marfan, LDS, and VEDS Around the World: The Marfan 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 to connect with others – both affected people and families, as well as leading medical professionals.

Our one-day symposiums 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

Co-hosts for the London Symposium are Marfan Trust UK, The Aortic Dissection Charitable Trust, and Annabelle’s Challenge. Special thanks to Terumo Aortic for their sponsorship.

Co-hosts for the Oslo Symposium are, Marfanforeningen, Suomen Marfan-yhdistys ry, and Svenska Marfanföreningen. 

“We are proud to collaborate with The Marfan Foundation to host the international patient day in London,” said Jared Griffith, 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 offering a chance for people to mix, mingle, and find friendship.”

These symposiums in Europe occur the same week as researchers on aortic disease gather in Norway for TromsøAorta2024, a combined meeting of the GenTAC Alliance, a division of The Marfan Foundation, and IRAD, the International Registry for Aortic Disease. Learn more at

To view all the Foundation’s international events, visit

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Eileen Novins is the Chief Global Business Development Officer of The Marfan Foundation. She is passionate about helping to empower our Marfan, LDS, and VEDS communities around the world through collaborations that provide programs and services that are accessible across borders and time zones.

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