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.
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August 2026
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.
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.
The Northern Illinois Chapter Potluck Picnic
Please join the Northern Illinois Chapter of the Marfan Foundation for a potluck picnic and fun outdoor activities for the whole family! On GPS, enter 26401 Grande Park Blvd (IP Code 60585), the clubhouse/pool to the east of the park. Enter the large parking lot marked with the Community Park sign and go to the […]
San Francisco Lunch – August 2026
Come connect with others with connective tissue conditions! We’ll get lunch at: The Grove – 690 Mission St San Francisco, CA 94105 Vegetarian, vegan, and gluten free options are 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!
September 2026
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.
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 […]
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.
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.
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.
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.
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 […]
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