Know the Signs, Fight for Victory

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December 2025

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 […]
03 Dec
8:00 pm - 9:00 pm
Zoom
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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.
04 Dec
5:00 pm
Virtual
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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 […]
04 Dec
7:00 pm - 8:00 pm
Zoom
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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.
08 Dec
Virtual
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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.
09 Dec
6:00 pm - 7:00 pm
Virtual
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(Rescheduled) VEDS Parents (under 18)

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.
10 Dec
8:00 pm
Virtual
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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 […]
11 Dec
7:00 pm - 8:00 pm
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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), […]
12 Dec
11:00 am - 12:00 pm
Zoom
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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!
13 Dec
12:00 pm - 2:00 pm
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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.
15 Dec
7:30 pm - 9:00 pm
Zoom
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