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July 2026

Camp Victory for Kids: California 2026

Don’t miss out on this opportunity for your child/children, ages 7-16, to attend Camp Victory for Kids. This five-night camp is designed for kids with Marfan, VEDS, Loeys-Dietz, and related syndromes and their siblings to participate in a traditional overnight camp in a safe and accessible setting. Give your kid(s) the gift of friendship, independence, […]
26 - 31 Jul
4:00 pm - 10:00 am
Sierra Nevada Journeys - Grizzly Creek Ranch
5900 Grizzly Road, Portola, CA 96122
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August 2026

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.
03 Aug
7:30 pm
Zoom
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Tall Clubs International Casino Night

Dinner, DJ & DancingBlackjack, Roulette, Craps Silent Auction and RaffleAdmission is $80.00 with $10.00 going directly to the Marfan Foundation. Theremay be an additional charge for parking.All Marfan silent auction proceeds will benefit Marfan Foundation. Dress code is formal/semi-formal. Must be 21 years or older.Questions: Please contact Michele Cripps at chelk22@aol.comPlease make payments to:2026 TCI […]
04 Aug
5:00 pm - 10:00 pm
Whisky Hotel Hollywood
1717 Wilcox Ave Los Angeles, CA 90028
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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 […]
05 Aug
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.
06 Aug
5:00 pm
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.
11 Aug
6:00 pm - 7:00 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 […]
13 Aug
7:00 pm - 8:00 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.
17 Aug
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.
18 Aug
7:00 pm - 9:00 pm
Virtual
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