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. Jan Lynch, RN, of The Marfan Foundation’s Help & Resource Center, will host this group. * If your child is under 18, please register for the VEDS Parents Support Group * This group […]

08 Jan

7:00 pm - 8:00 pm

Zoom

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<Rescheduled> 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 first Wednesday of every month at 7 pm EST. […]

08 Jan

8:00 pm - 9:00 pm

Zoom

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LDS Connect

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 the challenges we all face day-to-day. If you have not yet been diagnosed with LDS, please check out the Seeking Diagnosis group here

09 Jan

7:00 pm - 8:00 pm

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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.

13 Jan

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 Jan

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 Jan

8:00 pm

Virtual

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Support for Parents/Guardians of Children w/Marfan, LDS, related conditions

Are you are a parent or guardian of a child with Marfan syndrome, Loeys-Dietz syndrome or a related connective tissue condition? Is your child 18 years old and younger? If so, we invite you to join other parents to discuss the challenges of raising a child with one of these conditions. This group meets on […]

15 Jan

7:00 pm - 8:00 pm

Zoom

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Conexiones: Estamos juntos (impartido en español)

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.

15 Jan

7:30 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 Jan

5:00 pm - 6:00 pm

Virtual

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Marfan Connect (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 Jan

3:00 pm

Virtual

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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 Jan

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 Jan

7:00 pm - 9:00 pm

Virtual

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