Thank you for signing up for updates from The VEDS Movement! Here are a few resources to help you get started.
There are many ways to get your questions answered and meet others in the community.
The Help and Resource Center
Our Help and Resource Center is staffed by a registered nurse who can help answer your questions Monday through Friday, 9 am to 5 pm Eastern time.
Find a Doctor
Our Institutional Directory is a great place to start if you are looking for a doctor knowledgeable about VEDS.
There are several virtual support groups available which meet regularly through a virtual meeting platform.
Visit our webinar pages to see past medical, personal perspective, and empowerment series webinar recordings and register for upcoming webinars for our VEDS community.
Other Information about VEDS
Learn more about VEDS by starting here.
Visit our research pages to learn about participating in a study and find studies actively enrolling. If you are a researcher, you can also learn about our research grant program, find study participants, and participate in the VEDS Scientific Meeting.
Emergency Preparedness Resources
Being prepared for an emergency is critical with VEDS. Visit our emergency preparedness page to download important resources, like the Emergency Preparedness Kit and Card, as well as get information your doctor can put in your electronic health record.
Resources for Parents
Visit our parent toolkit to get important information to help you care for your child with VEDS, including the brochures for School Nurses and Teachers.
Kids Club is a virtual social group for children ages 9-12 with Marfan, VEDS, LDS, or related conditions. This group is cohosted by a member of the VEDS community, Ashley Rose Marisch, and The Marfan Foundation’s social worker, Andrea Friedman.
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.
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.
Camp for Victory for Families and Kids
Children with Marfan, VEDS, and LDS can experience various camps in an environment that is safe for them. It also enables them to create connections with other kids who are just like them and form meaningful bonds that can last a lifetime.
Visit our events page to learn more about opportunities to get involved and meet others in the community.