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Get Involved

We can help you achieve victories over Marfan syndrome and related conditions by offering meaningful ways you can make a difference. You can help us raise awareness; learn more about these conditions and then share what you know! Help us advance research by making a donation or by advocating with legislators to support funding for research. You can also get involved by becoming a part of our community give and get support. Click on the links below to learn more about how you can get involved.


Ways to Give

Your contribution today allows us to continue to pursue innovative, life-saving research, educate the public and patient community, and provide personalized support to individuals and families.

Run or Walk for Victory

Walk for Victory

One way to volunteer is through our national walk program. Learn how you can walk for victory and help the Marfan syndrome and related conditions community.

E3 International Summit

An incredible three-week virtual program featuring medical experts from all over the world on an array of topics related to the diagnosis and treatment of Marfan syndrome, Loeys-Dietz syndrome, VEDS (Vascular Ehlers-Danlos syndrome), Stickler syndrome, and other genetic aortic conditions. Participate and learn from the comfort of your own home!

Annual Conference

Our annual conference, held each summer, features presentations by leading experts on the diagnosis and treatment of Marfan and related conditions. We also provide research updates and ways to enhance your quality of life. It's a great way for people of all ages to create connections within our community.

Regional Symposiums

Our full-day regional educational symposiums bring our conference experience to different regions of the country. Each symposium features a full schedule of presentations on medical and quality of life issues, as well as a Creating Connections luncheon.

Social Events

The HeartWorks galas, held in New York City and St. Louis, are sparkling events that bring together the business, medical, and patient community to celebrate deserving honorees. Our newest social event is Evening with Heart, a fun filled upscale cocktail party. Four events are planned for the coming year. Social events raise critical funds for the Foundation's support, awareness, and medical education programs.



You can make a difference for the Marfan syndrome and related conditions community! Find out how you can join us in our fight for victory!

Participate in a Study

Participate in a Study

Doctors and scientists who conduct research on Marfan syndrome and related conditions frequently need to involve people living with these conditions. Find out how you can help advance research by enrolling in a study.

Connect with Community

Connect with Community

There's a warm and welcoming community to help you live successfully with Marfan syndrome or a related conditions. Learn how you can connect with people online and in your own backyard.

Mentor Program

The mentor program ensures that anyone who wants to connect with someone and ask questions has a way to do this, regardless of their location. It is a great opportunity for people learn and get support from others in the community.

Marfan Camps

Now, children with Marfan and related disorders can have a camp experience in an environment that is safe for them. They can learn independence and grow in a safe environment at Camp Victory and our Family Camp. They can create connections with other kids who are just like them and form meaningful bonds that can last a lifetime.