The Marfan Foundation’s 2026 Global Virtual Conference connected individuals and families from around the world with leading experts, the latest research, and one another.
The Marfan Foundation’s biggest Global Virtual Conference to date was more than a registration milestone—it was a reflection of a growing global community eager to learn, connect, and support one another. Held June 15–18, the four-day event brought together more than 1,800 registrants from 55 countries with some of the world’s leading medical and mental health experts in connective tissue conditions.
Community members logged on for different reasons. Some wanted to speak directly with an expert. Some longed for a conversation with another parent. Others were looking for a research update that could offer hope.
“Learning about the most up-to-date research was probably the most important thing for me,” said Jennifer L. Thomas, whose son, Colton, lives with VEDS. “But I did appreciate many of the sessions and the variety of topics from psychological support to eye complications. The presenters really knew their stuff; they were top notch.”
Those opportunities for learning and connection were woven throughout the conference’s more than 50 sessions, which included workshops, presentations, Q&A sessions, and condition-specific breakout groups where attendees could connect with others who shared similar experiences. More than 145 kids and teens, from ages 7-17, enjoyed their own programming, from a scavenger hunt to multiple “Ask the Experts” sessions.
For John Aimo, who lives with Marfan syndrome and co-presented the workshop Family Dynamics in the Context of Genetic Aortic Conditions, it’s all about the feeling of connection. “One thing I learned is that the struggles that I’m having—other people are having them as well. So, I felt like I was not alone. I appreciate the Foundation and all the work they’ve done to bring this network of people together for support.”
Aortic health was a major focus throughout the conference. Other sessions addressed topics relevant to many attendees, including Understanding Imaging Reports in Plain Language; Eye Issues and Key Management Considerations in Connective Tissue Conditions and Pre or Post Surgical Mental Health Concerns.
Some sessions offered condition-specific information tailored to the unique needs of ipeople living with Marfan, Loeys-Dietz, VEDS, or Stickler.
Mary Meyers, whose daughter was diagnosed with Loeys-Dietz before her second birthday, appreciated the targeted programming. One session focused on the groundbreaking updated LDS management and care primer that was published earlier this month; another one honed in on understanding your LDS subtype. “I’m a mom of an LDS type 2 R528 variant. I believe that the updated primer is going to be super helpful in her management going forward. I also learned that because of her subtype, she can differ in severity, presentation, and management. As a parent to a de novo mutation, these sessions are not only helpful to me, but to her medical care team. It offers a roadmap for what could be happening now and what the future could possibly hold.”
Lauren May, the Foundation’s Senior VP of Research, said the Conference program was intentionally designed to reflect the needs and interests of the community.
“From selecting topics to engaging expert speakers, every aspect of the program was shaped by what we consistently hear from our communities are their top priorities and what they want to learn about,” said May.
She was also encouraged by the level of engagement throughout the conference. “It was so powerful,” May said. “Even in a virtual setting, there was so much connection and sharing of personal experiences.”
That spirit of connection extended far beyond the United States. While the largest international audiences came from the United Kingdom, Canada, and Australia, attendees also joined from countries including South Africa, India, and Italy. The conference also introduced hundreds of new individuals and families to the Foundation, with 535 people joining the organization’s mailing lists by the event’s conclusion. Participants further demonstrated their support through donations totaling nearly $5,000.
The connections made during this year’s conference will continue when the community gathers in person for the Marfan Foundation Conference, July 8–11, 2027, in Santa Clara, California. Hosted by Stanford Health Care, the conference will feature leading experts, educational sessions, and countless opportunities for connection.
“One of the most powerful aspects of our Virtual Conference is its ability to bring together individuals and families from around the world who are navigating similar challenges,” said Marfan Foundation President and CEO Michael L. Weamer. “By providing access to leading experts, the latest research, and a supportive global community, we help ensure that no one has to navigate these conditions alone. We are proud to continue creating opportunities for our community to learn, connect, and thrive. Onward!”
To find virtual and in-person events for the Marfan, Loeys-Dietz, VEDS, Stickler syndrome and related conditions community, visit marfan.org/calendar
Need help with non-urgent medical questions? Visit marfan.org/ask
Want to power search the Marfan Foundation’s resources in any language? Visit marfan.org/communitycompanion
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.