Teen Game Night
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.
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December 2025
VEDS Connect
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.
Stickler Connect
You are warmly invited to join our support group for individuals diagnosed with Stickler syndrome. This group offers a welcoming space to connect with others who understand your experiences and share valuable resources and information. Join us every first Wednesday of the month at 8:00 PM Eastern Time to share stories, find support, and build […]
Marfan Connect
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.
Music and Mindfulness: Supporting Well-Being for Individuals Living with Aortic and Vascular Conditions through Music Therapy
In this interactive webinar, music therapist and mindfulness practitioner Katelyn “Katey” Kratz, LPMT, MT-BC—who is herself living with Loeys-Dietz Syndrome—will explore how music and mindfulness can support resilience, relaxation, physical wellness, stress reduction, emotional well-being, and beyond. Participants will learn what music therapy is, how to access qualified music therapists, and simple, practical ways to […]
A Time to Talk: Monday Matters!
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 Loss
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.
Support for Parents/Guardians of Children with Early-Onset (Neonatal) Marfan Syndrome
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.
LDS Connect
Please Note: Due to our scheduling conflicts with our Conference in Atlanta, this group will meet on Thursday July 3, 2025 at 7pm EST. (instead of Thursday July 10, 2025) 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 […]
Best Practices for Preclinical Thoracic Aortopathy Studies
Join the Genetic Aortic Network on December 12 at 11:00 a.m. ET for a webinar on highlights from “Recommendations for Design, Execution, and Reporting of Studies on Experimental Thoracic Aortopathy in Preclinical Models” (Arteriosclerosis, Thrombosis, and Vascular Biology, 2025). During this session, Alan Daugherty, PhD, DSc (University of Kentucky, USA), Scott LeMaire, MD (Geisinger, USA), […]
San Francisco Marfan Meetup
Connect with others with connective tissue conditions! Let’s get lunch at Gotts Roadside at Chase Center in San Francisco. Vegetarian, vegan, and gluten-free options available. Feel free to bring friends and loved ones. Please RSVP on Partiful or by emailing isaacbrodsky@live.com. Please feel free to spread the word!
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.
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