Marfan Connection

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 Dec

5:00 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. ...

06 Dec

7:30 pm

Zoom

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Coping with COVID Stress

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. ...

06 Dec

8:00 pm

Virtual

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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 Dec

8:00 pm

Virtual

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2021 Orlando Walk for Victory

Walk for Victory is The Marfan Foundation’s global walk program ...

11 Dec

12:00 pm - 3:00 pm

Bill Frederick Park at Turkey Lake

3401 S Hiawassee Rd. Orlando, FL 32835

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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 Dec

6:00 pm - 7:00 pm

Virtual

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Coping with Loss

This group discussion is dedicated to the challenges our community faces when we lose our beloved friends, community members, and family members to VEDS. ...

14 Dec

6:00 pm

Virtual

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Newly Diagnosed & Those Seeking Diagnosis

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. ...

16 Dec

5:00 pm - 6:00 pm

Virtual

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50+ Support

Are you diagnosed with Marfan syndrome or a related condition? Are you 50 years old or older? Would you like to connect with others in your age group? If so, this group is for you. ...

17 Dec

3:00 pm

Virtual

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Teens Together: A Night to Chat

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 Dec

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 Dec

7:00 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 Dec

8:00 pm

Virtual

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