Know the Signs, Fight for Victory

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April 2024

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.
01 Apr
7:30 pm
Zoom
2024 Virtual Advocacy Day Graphic

Sign Up by 3/22 – Advocacy Training Webinar

Be Heard, Take Action The Marfan Foundation and its divisions are pleased to announce we are hosting Virtual Capitol Hill Days, to take place April 9-11, 2024. Through virtual meetings with congressional members and their staff, you can share your story and encourage support of policies that may affect healthcare and research. Each congressional visit […]
02 Apr
7:00 pm - 8:00 pm

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.
04 Apr
5:00 pm
Virtual

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.
08 Apr
Virtual

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.
09 Apr
6:00 pm - 7:00 pm
Virtual

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. This group will be hosted by Jan Lynch, RN, director of The Marfan Foundation’s Help & Resource Center. * If your child is under 18, please register for the VEDS Parents Support […]
10 Apr
7:00 pm - 8:00 pm
Zoom

#MarfanRealReels Community Movie Night

Ready for a viewing party? Register today to take part in #MarfanRealReels Movie Night. We’ll hold the world premiere of a Turkish documentary on Marfan syndrome and show all the #RealReels we featured during Marfan Awareness Month. You’ll also receive a link to a movie night “fun kit.” The event is free, and all are […]
10 Apr
8:30 pm - 9:30 pm
Zoom

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
11 Apr
7:00 pm - 8:00 pm

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.
15 Apr
7:30 pm - 9:00 pm
Zoom
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