Newly Diagnosed & Those Seeking DiagnosisRepeating 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.
Teen TalkRepeating Event
This is a teen group for teens ages 13-18 with VEDS, Marfan, Loeys-Dietz, or a related condition. Teens are invited to register to join in for a talk with other teens they can relate to.
Aortic Emergencies: Webinar for Aussies and Kiwis
Please join us for a webinar on aortic emergencies that is geared toward people living in Australia and New Zealand. Dr. Michelle Lim, a member of the Foundation’s Genetic Aortic Network Education Working Group, leads this effort for Aussies and Kiwis. The featured speakers are Dr. Benjamin Robinson, Consultant Cardiothoracic Surgeon at Royal Prince Alfred […]
Kids ClubRepeating Event
Join us for the Kids Club, a virtual social group for children ages 9-12 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions to increase opportunities for social interaction and connection with others who have a similar diagnosis.
Support for Parents/Guardians of Children w/Marfan, LDS, related conditionsRepeating Event
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 […]
Conexiones: Estamos juntos (impartido en español)Repeating Event
Are you diagnosed with Marfan syndrome or a related disorder? Are you between 30 and 50 years old? Would you like to connect with others living with Marfan syndrome and related disorders for support and to share resources and information? If so, this group is for you.
VEDS Partners and SpousesRepeating Event
This group is for partners, spouses, and significant others of individuals diagnosed with VEDS to talk about their experience with others with similar experiences.
Support for Young Adults with Marfan, VEDS, LDS and related conditionsRepeating Event
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 fourth Tuesday of every month at 8 pm EST.
VEDS Parents (Under 18)Repeating Event
If you are a parent of a child with VEDS, we invite you to join other parents to discuss the challenges of raising a child with this condition. This group will be hosted by Jan Lynch, RN, director of The Marfan Foundation’s Help & Resource Center, and Abby DeLong, VEDS parent and patient advocate.
Teen Game NightRepeating Event
This is a teen group for teens ages 13-18 with VEDS, Marfan, Loeys-Dietz, or a related condition. Teens are invited to register to join in the fun. We will be playing games using the Jackbox game series.
VEDS ConnectRepeating Event
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.
A Time to Talk: Monday Matters!Repeating Event
Join us for the Kids Club, a virtual social group for children ages 9-12 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions to increase opportunities for social interaction and connection with others who have a similar diagnosis.
Coping with Grief and LossRepeating Event
Have you lost a loved one to Marfan syndrome or a related condition? Grief is a long and difficult process. Everyone experiences grief differently, but talking with others who can relate to what you are going through can be very helpful.
VEDS Parent Support Group for Adult ChildrenRepeating Event
If you are a parent of an adult (18 years and older) with VEDS, we invite you to join other parents to discuss your experiences. * If your child is under 18, please register for the VEDS Parents Support Group * This group meets on the second Wednesday of every other month from 7-8:30 pm
Driving for DEFY Golf Tournament
2026 marks the 12th anniversary of the Driving for DEFY golf outing! Together, we have raised over $160,000 in support of the DEFY Foundation’s mission to enable the rapid discovery of viable treatments and a cure for VEDS by serving as the connective tissue between researchers, pharmaceutical leaders, and the VEDS community. This year also […]
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