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October 2026

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 […]
07 Oct
8:00 pm - 9:00 pm
Zoom
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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 […]
08 Oct
7:00 pm - 8:00 pm
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London Symposium: Living Better with Marfan, Loeys-Dietz, VEDS, and Stickler

Due to overwhelming response and due to room safety capacity limits, we must cap registration at this time. Please reach out to Eileen if you have questions enovins@marfan.org. Please join us for our Second International Symposium/London: Living Better with Marfan, Loeys-Dietz, VEDS and Stickler. The presentations, which will feature medical experts from the UK and from […]
10 Oct
8:00 am - 4:30 pm
Radisson Blu Edwardian Bloomsbury Street Hotel, London
9-13 Bloomsbury St, WC1B 3QD, London, UK
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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.
13 Oct
6:00 pm - 7:00 pm
Virtual
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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.
19 Oct
7:30 pm - 9:00 pm
Zoom
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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.
20 Oct
7:00 pm - 9:00 pm
Virtual
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Camp Victory for Families: California 2026

Join us for this exciting opportunity to meet other families impacted by Marfan, VEDS, Loeys-Dietz, and related syndromes. Enjoy your time with your entire family, participating in traditional camp activities in a safe and accessible environment. Registration fees have been significantly discounted thanks to the support of our generous donors, especially Keck Medicine of USC […]
23 - 25 Oct
4:00 pm - 11:00 am
Pali Retreat
30778 Highway 18, Running Springs, CA 92382
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