Know. Connect. Thrive.

The Marfan Foundation’s 2026 Global Virtual Conference brings together a global community of individuals living with Marfan syndrome, Loeys-Dietz syndrome (LDS), Vascular Ehlers-Danlos syndrome (VEDS), Stickler syndrome, and related conditions, as well as their families, healthcare professionals, and researchers.  

Over four days, participants will explore the many dimensions of life with these conditions through sessions on medical care, mental health, emerging research, and opportunities to learn, connect, and build community — supporting participants to Know. Connect. Thrive. 

Attendees may select sessions aligned with their interests and hear from clinical experts, researchers, and community voices.

This event is offered free of charge to the Foundation community. Sessions are scheduled throughout each day to accommodate a range of time zones and availability. Where applicable, recorded sessions will be noted in the event descriptions.

The deadline to register for the Kids and Teens programs is Monday, June 8. There is no registration deadline for sessions designed for adults.

Registration Coming Soon

Questions? Visit our FAQ section.

AGENDA

Note: All times are Eastern Daylight Time

  • Monday, June 15 

    • 12:15-1:30 p.m. – General Session Kickoff
    • 2:00-3:00 p.m. – International Connection Opportunity
    • 4:00-5:00 p.m. – Research Presentations
    • 7:00-8:00 p.m. – Condition-specific Connection Opportunities
    • 7:00-8:00 p.m. – Teen Connection Opportunity

  • Tuesday, June 16

    • 12:00-1:00 p.m.  – Artistic Expression for Teens (Ages 13-18)
    • 12:00-5:00 p.m. (with breaks) – Sessions Relating to Marfan, Loeys-Dietz, VEDS, and Stickler 
    • 6:00-8:00 p.m. – Replays of Research Presentations
    • 7:00-8:00 p.m. – Kids’ Scavenger Hunt (Ages 9-12)

  • Wednesday, June 17

    • 12:00-8:00 p.m. (with breaks) – Sessions Relating to Marfan, Loeys-Dietz, VEDS, and Stickler
    • 6:00-7:00 p.m.  – Teens Ask the Experts (Ages 13-18)
    • 7:00-8:00 pm – Kids Ask the Experts (Ages 9-12)
    • 7:00-8:00 p.m. – Personal Perspectives: Teen Transitions (Ages 13-18)

  • Thursday, June 18

    • 1:00-4:00 p.m. (with breaks) – Sessions Relating to Marfan, Loeys-Dietz, VEDS, and Stickler
    • 4:00-4:15 p.m. – Closing Session
Download Detailed Agenda Soon

2026 VIRTUAL CONFERENCE HIGHLIGHTS

  • Step 1 General Session

    During the opening session on Monday, June 15, we’ll share how the Foundation is connecting with individuals and families around the world living with Marfan, Loeys-Dietz, VEDS, Stickler, and related conditions. We’ll also hold a Personal Perspectives Panel where panelists will share their experiences navigating decisions, challenges, and opportunities related to education and employment, as well as how they approach workplace experiences and considerations related to their health. 

  • Step 2 Connection Opportunities

    On Monday, June 15, there will be several breakout connection opportunities available by condition. This is a great opportunity to meet others who share similar experiences. A Spanish-language connection session will also be offered for members of our Spanish-speaking community.

  • Step 3 Workshops

    Virtual Conference offers many workshops led by medical, mental health, and quality of life experts in connective tissue conditions. Learn the latest on treatments, research, mental health and well-being, and more. You’ll also hear from experienced community members who will share insights from their own health journeys. Review the program to explore the workshops and decide which ones are right for you.

  • Step 4 Ask the Expert Sessions

    On Wednesday, June 17 and Thursday, June 18, attendees can ask questions and gain practical insights for their own care decisions or for their loved ones.

  • Step 5 Kids & Teens

    Kids and teens have dedicated Virtual Conference programming designed just for them. Explore the program to learn more.

During the opening session on Monday, June 15, we’ll share how the Foundation is connecting with individuals and families around the world living with Marfan, Loeys-Dietz, VEDS, Stickler, and related conditions. We’ll also hold a Personal Perspectives Panel where panelists will share their experiences navigating decisions, challenges, and opportunities related to education and employment, as well as how they approach workplace experiences and considerations related to their health. 

Registration Coming Soon

STORE

Celebrate and remember your virtual experience with our custom-designed merch. With these commemorative items, you’ll not only have a conference keepsake but help spread awareness in your community and beyond! 

Visit Store

FAQ

  • Is there a registration fee?

    No, the virtual conference is free of charge. If you would like to support programs like Conference, you can make a donation at Marfan.org/donate.

  • How do I select which sessions to attend after registering?

    You will receive a Zoom link after registering to select your sessions.

  • Does each adult in my household need to register?

    If you are going to participate together, only one adult needs to register. 

  • Do I need to register my child with a separate email address?

    No, registration for children is completed with the parent/guardian’s email.

  • Is there a deadline to register?

    The deadline to register for the Kids and Teens sessions is Monday, June 8. There is no deadline for any other sessions. 

  • If I miss a session, will I be able to watch a recording?

    For privacy, none of the Connection Opportunity sessions will be recorded. Other select sessions will be recorded and replayed during the virtual conference. Please refer to the session descriptions for details. 

  • Do I need to register my teen with a separate email address?

    Yes, teens participating in the teen sessions need to register with their own email. 

  • Have another question or need help?