LDS Connect International

Please Note: Due to Memorial Day (US) this group will meet on Tuesday May 27, 2025 at 2pm EST. (Instead of Monday May 26, 2025) The LDS International Connect is a support group for any person living with Loeys-Dietz Syndrome, as well as parents and caregivers of people with Loeys-Dietz Syndrome. This group is intended […]

25 Aug

2:00 pm - 3:30 pm

Zoom

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VEDS Partners and Spouses

This group is for partners, spouses, and significant others of individuals diagnosed with VEDS to talk about their experience with others with similar experiences.

26 Aug

6:00 pm

Virtual

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Support for Young Adults with Marfan, VEDS, LDS and related conditions

Have you been diagnosed with Marfan syndrome, VEDS, Loeys-Dietz syndrome or another related condition? Are you between the ages of 18 and 30?  Would you like to connect with others in your age group? If so, this support group is for you. This group meets on the fourth Tuesday of every month at 8 pm EST.

26 Aug

8:00 pm - 9:00 pm

Zoom

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VEDS Parents

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.

27 Aug

8:00 pm

Virtual

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Pain Management

Are you or a loved one recently diagnosed with Marfan syndrome or a related condition? Are you or a loved one seeking diagnosis? If you would like to connect with others who are just starting out on this medical journey, this group is for you.

28 Aug

7:00 pm

Virtual

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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.

01 Sep

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.

02 Sep

8:00 pm

Virtual

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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 Sep

5:00 pm

Virtual

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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 […]

06 Sep

8:00 pm - 9:00 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 Sep

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 Sep

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.

09 Sep

8:00 pm

Virtual

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