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October 2025

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.
13 Oct
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.
14 Oct
6:00 pm - 7:00 pm
Virtual
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Living with Stickler Syndrome: Professional and Personal Perspectives

This webinar will highlight life with Stickler syndrome from clinical and lived experience viewpoints. Dr. Taran Youssefian Blakstvedt, a licensed clinical psychologist at the TRS National Resource Centre for Rare Disorders in Norway, will share preliminary findings from her ongoing research on quality of life in individuals with Stickler syndrome. In addition, three community members […]
15 Oct
1:00 pm - 2:00 pm
Zoom
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Northern IL Chapter Fall Fest 2025

Join the Northern IL Chapter for outdoor fall fun for the whole family with a hayride, bonfire, and cookout! Enjoy a fall afternoon together in Naperville at Knoch Knolls Nature Center! We’ll start with a hayride while sipping hot chocolate and apple cider. The Northern IL Chapter will supply hot dogs and ingredients for making […]
18 Oct
2:00 pm - 4:00 pm
Knoch Knolls Nature Center
320 Knoch Knolls Road, Naperville, IL 60565
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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.
20 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.
21 Oct
7:00 pm - 9:00 pm
Virtual
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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.
22 Oct
8:00 pm
Virtual
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