Marfan Connect (50+) Support
Are you diagnosed with Marfan syndrome or a related condition? Are you 50 years old or older? Would you like to connect with others in your age group? If so, this group is for you.
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January 2026
Newly Diagnosed & Those Seeking Diagnosis
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 Talk
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.
Kids Club
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 conditions
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 […]
Hearing Issues in Stickler: Diagnosis and Treatment
Please join us for an educational webinar, Hearing in Stickler: Diagnosis and Treatment. This free virtual event is for individuals living with Stickler and family members. The featured speakers are: Steven Goudy, MD, MBA, FACS, chair of Otolaryngology at Macon & Joan Brock Virginia Health Sciences Eastern Virginia Medical School at Old Dominion University, and […]
Conexiones: Estamos juntos (impartido en español)
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.
QUINTA CUMBRE ANUAL EN ESPAÑOL
Invitamos a pacientes y sus familias a unirse a nosotros en un día educativo sobre el síndrome de Marfan, el síndrome de Loeys-Dietz y el síndrome vascular de Ehlers-Danlos (VEDS). La cumbre de este año contará con presentaciones sobre los últimos avances en investigación y genética/planificación familiar. Además, expertos locales hablarán sobre cómo obtener atención […]
The Northern Illinois Chapter’s Annual Chocolate Fundraiser
February is Marfan Awareness Month! Let’s come together for our Chili and Chocolate Social for great fellowship and delicious food. We will also have boxes of World’s Finest Chocolate bars that you can pick up to sell to your family, friends, neighbors, co-workers, etc., to help raise money for research and programs funded through the Marfan Foundation. Check […]
LDS Connect International
Please Note: Due to Memorial Day (US) this group will meet on Tuesday May 27, 2025 at 2pm EST. (Instead of Monday May 26, 2025) The LDS International Connect is a support group for any person living with Loeys-Dietz Syndrome, as well as parents and caregivers of people with Loeys-Dietz Syndrome. This group is intended […]
Choosing the Right Genetic Testing for Marfan, LDS, VEDS, and Stickler
Beyond Direct-to-Consumer: Choosing the Right Genetic Testing for Marfan, LDS, VEDS, Stickler, and Related Conditions Direct-to-consumer genetic testing can offer interesting insights into ancestry and common traits, but may fall short when it comes to identifying hereditary conditions like Marfan, VEDS, LDS, and Stickler. During this webinar, Maya Brown-Zimmerman, MPH, MS, CGC, a cardio genetic […]
VEDS Partners and Spouses
This group is for partners, spouses, and significant others of individuals diagnosed with VEDS to talk about their experience with others with similar experiences.
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