Have you been diagnosed with Marfan syndrome, VEDS, Loeys-Dietz syndrome or another related condition? Are you between the ages of 18 and 30?  Would you like to connect with others in your age group? If so, this support group is for you.

This group meets on the first Wednesday of every month at 7 pm EST.

This group is for adults, 18-50, with Marfan syndrome or a related condition. Participants have the opportunity to connect with others with a similar diagnosis for support and sharing of resources and information. This group meets on the 1st Thursday of every month at 5:00 PM Eastern.

If you have been diagnosed with VEDS, this group is specifically for you! This is an opportunity to meet others with VEDS and talk about the challenges we all face day-to-day. If you have not yet been diagnosed with VEDS, please check out the Seeking Diagnosis group here.

If you have been diagnosed with LDS, this group is specifically for you! This is an opportunity to meet others with LDS and talk about the challenges we all face day-to-day. If you have not yet been diagnosed with LDS, please check out the Seeking Diagnosis group here.

Please join us as we celebrate the 14th Annual Heartworks St. Louis Gala at The Four Seasons.  We will be honoring  Reed Pyeritz, MD, PhD, with a Lifetime Achievement Award and presenting Sanjeev Bhalla, MD with a Hero with Heart Award.

If you are experiencing added stress due to the COVID pandemic, please join us for this weekly virtual support group facilitated by the nurse from the Help and Resource Center. The group members will share thoughts, fears, anxiety and any issues related to the pandemic, or just listen in a safe non-judgmental environment.

If you are experiencing added stress due to the COVID pandemic, please join us for this weekly virtual support group facilitated by the nurse from the Help and Resource Center. The group members will share thoughts, fears, anxiety and any issues related to the pandemic, or just listen in a safe non-judgmental environment.

This group discussion is dedicated to the challenges our community faces when we lose our beloved friends, community members, and family members to VEDS, Marfan, or Loeys-Dietz syndrome. It is a safe place for us to discuss our emotions, honor the memory and joy of our loved ones, and move forward together. This group is also open to anyone coping with loss in the community.

This group meets on the 2nd Tuesday of every month at 6:00 PM Eastern.

Are you are a parent or guardian of a child with Marfan syndrome, Loeys-Dietz syndrome or a related connective tissue condition? Is your child 18 years old and younger? If so, we invite you to join other parents to discuss the challenges of raising a child with one of these conditions.

This group meets on the third Wednesday of every month at 7 pm EST.

View Event

Are you or a loved one recently diagnosed with Marfan syndrome or a related condition? Are you or a loved one seeking diagnosis? If you would like to connect with others who are just starting out on this medical journey, this group is for you. This group meets on the 3rd Thursday of every month at 5:00 PM EST.

The Marfan Foundation is hosting a virtual group for Teens ages 13-18 with Marfan syndrome, VEDS, Loeys-Dietz syndrome and related genetic aortic and vascular conditions, to increase opportunities for social interaction with others who have a similar diagnosis. The Teen Talk will include open conversation and connection on various appropriate topics and will be led by our staff member, Dominga Noe and our volunteer leader Peter Donato. This group is not designed to offer therapy or counseling, but rather an opportunity to speak on the highs and lows of living with chronic conditions and be more connected with others in the same age group.

Each group will run for approximately 90 minutes and will be held from 7:30-9:00 pm ET on the third Monday of each month, beginning in February 2021 (Feb. 18th). The group will be held on Zoom. It is expected that teens join on camera and participate for the duration of the group. Pre-registration and parental/guardian consent for the group is required.