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

12 Dec

7:00 pm - 8:00 pm

• • Facebook
  • Twitter
  • Linkedin
  • Email

View Detail

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.

16 Dec

7:30 pm - 9:00 pm

Zoom

• • Facebook
  • Twitter
  • Linkedin
  • Email

View Detail

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.

17 Dec

7:00 pm - 9:00 pm

Virtual

• • Facebook
  • Twitter
  • Linkedin
  • Email

View Detail

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 […]

18 Dec

7:00 pm - 8:00 pm

Zoom

• • Facebook
  • Twitter
  • Linkedin
  • Email

View Detail

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.

18 Dec

7:30 pm

Virtual

• • Facebook
  • Twitter
  • Linkedin
  • Email

View Detail

(Rescheduled) 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.

18 Dec

8:00 pm

Virtual

• • Facebook
  • Twitter
  • Linkedin
  • Email

View Detail

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.

19 Dec

5:00 pm - 6:00 pm

Virtual

• • Facebook
  • Twitter
  • Linkedin
  • Email

View Detail

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.

20 Dec

3:00 pm

Virtual

• • Facebook
  • Twitter
  • Linkedin
  • Email

View Detail

LDS Connect International

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 for community members living outside of the United States. It is conducted in English. The LDS International Connect meets on the 4th Monday of each […]

23 Dec

2:00 pm - 3:30 pm

Zoom

• • Facebook
  • Twitter
  • Linkedin
  • Email

View Detail

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.

25 Dec

8:00 pm

Virtual

• • Facebook
  • Twitter
  • Linkedin
  • Email

View Detail

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.

01 Jan

7:00 pm - 8:00 pm

Zoom

• • Facebook
  • Twitter
  • Linkedin
  • Email

View Detail

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.

02 Jan

5:00 pm

Virtual

• • Facebook
  • Twitter
  • Linkedin
  • Email

View Detail