Know the Signs, Fight for Victory

The Marfan Foundation’s Global Virtual Conference connects people living with genetic aortic and vascular conditions, their loved ones, healthcare providers, and researchers from around the world for a unique event that holistically explores the many facets of life with Marfan, Loeys-Dietz, VEDS, and related conditions. Topics include advancements in medical management, mental health and well-being, the latest research, community-building, and much more. A series of live, engaging sessions will culminate with a virtual Victory Party celebration.  

Attendees can choose sessions based on what’s most important to them and hear from medical experts who will be available to answer questions. Condition-specific breakout sessions will create space for community members to connect with one another.  

Conference 2024 is offered free to the Foundation community and will span five days, June 17-22. In honor of Juneteenth commemorations, there will be no sessions on June 19. Afternoon and evening sessions will be available to accommodate varying schedules and time zones. Sessions recorded will be noted in event descriptions. 

The deadline to register for the kids and teens sessions is on Thursday, June 13.

There is no deadline for any other sessions. 

Register

Questions? Visit our FAQ section.

AGENDA

Note: All times are Eastern Standard Time

  • Monday, June 17 

    • 6:00-7:30 pm – General Session Kickoff
    • 8:00-9:00 pm – Support Group Breakout Sessions

  • Tuesday, June 18

    • 2:00-9:00 pm (with breaks) – Condition-Specific Sessions for Marfan, Loeys-Dietz, VEDS (last session is inclusive of all conditions) 
    • 7:00-8:00 pm – Kids Connect (7-12)
    • 7:00-9:00 pm – Teen Connect (13-18)

  • Thursday, June 20

    • 2:00-8:00 pm (with breaks) – Sessions Relating to All Conditions

  • Friday, June 21

    • 1:00-3:00 pm – Sessions Relating to All Conditions
    • 3:00-5:00 pm – Replays of Condition-Specific Research Sessions from June 18 (No live Q&A)

  • Saturday, June 22 

    • 10:00-11:00 am – Community Chat Breakout Rooms
    • 12:00-1:00 pm – Global Victory Party
Download Detailed Agenda

VIRTUAL CONFERENCE HIGHLIGHTS

  • Step 1 General Session

    During the opening session on Monday, June 17, we’ll explore ways to improve your outlook and the importance of connection. Immediately following, members of our community will provide their personal perspectives. 

  • Step 2 Workshops

    Virtual Conference offers many workshops led by top medical experts in genetic aortic and vascular 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 knowledge learned during their own medical journeys. View the program to read about the workshops and decide which ones are right for you.

  • Step 3 Support Groups

    On Monday, June 17, 8:00-9:00 pm ET, there will be several breakout support groups available by condition. This is a great opportunity to learn and connect with others. There is also a Spanish-Language Connect for our Spanish-speaking community.

  • Step 4 Kids & Teens

    On Tuesday, June 18, get to know other kids and teens through our meetups during conference. Kids Connect, ages 7-12, is 7:00-8:00 pm ET and Teen Connect, ages 13-18, is from 7:00-9:00 ET.  

  • Step 5 Community Chats

    On Saturday, June 22, we will offer four break-out sessions to explore common ground with other community members. Whether it’s through music, art, travel, cooking, movies, or how to maintain a healthy lifestyle, these sessions will leave you feeling connected and inspired!

  • Step 6 Victory Party

    Join your community across the globe on Saturday, June 22, 12:00 to celebrate with Grammy award nominee DJ Willy Wow. We’ll enjoy games, awards, and some surprises. It’s an event you won’t want to miss!    

During the opening session on Monday, June 17, we’ll explore ways to improve your outlook and the importance of connection. Immediately following, members of our community will provide their personal perspectives. 

Register

SOCIAL GRAPHICS

Let everyone know you will be attending The Marfan Foundation’s Global Virtual Conference! Download these fun and engaging social media graphics to share. You can add your photo to add a special touch.  

Step-by-step guide to place your photo into the graphic: 

  1. Follow the link to Canva.com. Either log in or sign up if you don’t have an account. 
  2. Once logged on, you’ll see the conference template. 
  3. Upload your image. Look for the option to upload your image (usually in the toolbar on the left). Click on it and select the image you want to use from your computer.
  4. Place your image. After uploading, drag and drop your image onto the template. You can resize and reposition it to fit the design using the handles around the image.
  5. Download the image. Once you’re happy with the design, you can download it to your computer or share it directly from Canva to your desired platform. 
  6. After you have downloaded or shared your image, be sure to delete your photo. Note that this is a shared file, and others will be able to view your photo if left in the image placeholder. 
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STORE

Celebrate and remember your virtual experience with our custom-designed t-shirts and tote bags. 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 I want to attend?

    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, then only one adult needs to register. 

  • Do I need to register my child with a separate e-mail?

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

  • Is there a deadline to register?

    The deadline to register for the Kids and Teens sessions is on Thursday, June 13. 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 support group sessions will be recorded. Some additional 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 e-mail?

    Teens participating in the teen session need to register with their own email. 

  • Have another question or need help?

    Email conference@marfan.org and we will do our best to resolve any issues and answer your questions.