Walk For Victory – Virginia

Join the Walk for Victory movement!  Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions.  Together, we raise awareness and help families get the best medical care from leading experts.  Together, we help fund events and programs that make life better for our community: […]

27 Jun

11:00 am - 2:00 pm

Darden Towe Park

1445 Darden Towe Park Road, Charlottesville, VA 22911

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Walk For Victory – Michigan

Join the Walk for Victory movement!  Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions.  Together, we raise awareness and help families get the best medical care from leading experts.  Together, we help fund events and programs that make life better for our community: […]

27 Jun

11:00 am - 2:00 pm

Central Park Pavilion

5151 Marsh Rd Okemos, MI 48864

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Walk For Victory – New Jersey

Join the Walk for Victory movement!  Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions.  Together, we raise awareness and help families get the best medical care from leading experts.  Together, we help fund events and programs that make life better for our community: […]

28 Jun

11:00 am - 2:00 pm

John W. Ginty Recreation Complex- Baseball Fields

15 Woodland Ave, Morristown, NJ 07960

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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 […]

01 Jul

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.

02 Jul

5:00 pm

Virtual

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Camp Victory for Kids: Georgia 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 children with Marfan, VEDS, Loeys-Dietz, and related syndromes, as well as their siblings, to participate in a traditional overnight camp in a safe and accessible setting. Give your kid(s) the gift of […]

05 - 10 Jul

4:00 pm - 10:00 am

Camp Twin-Lakes

210 S Broad Street, Unit 5, Winder, GA 30680

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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.

06 Jul

7:30 pm

Zoom

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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.

07 Jul

8:00 pm

Virtual

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VEDS Parent Support Group for Adult Children

If you are a parent of an adult (18 years and older) with VEDS, we invite you to join other parents to discuss your experiences. * If your child is under 18, please register for the VEDS Parents Support Group * This group meets on the second Wednesday of every other month from 7-8:30 pm *Please note, every […]

08 Jul

7:00 pm - 8:30 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 […]

09 Jul

7:00 pm - 8:00 pm

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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.

14 Jul

6:00 pm - 7:00 pm

Virtual

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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.

14 Jul

8:00 pm

Virtual

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