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Welcome to The VEDS Movement

Thank you for signing up for updates from The VEDS Movement! Here are a few resources to help you get started.

Support

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.

Help and Resource Center

Find a Doctor

Our Institutional Directory is a great place to start if you are looking for a doctor knowledgeable about VEDS.

Find a Doctor

Support Groups

There are several virtual support groups available which meet regularly through a virtual meeting platform.

Learn More

Education

Webinars

Visit our webinar pages to see past medical, personal perspective, and empowerment series webinar recordings and register for upcoming webinars for our VEDS community.

See Webinars

Other Information about VEDS

Learn more about VEDS by starting here.


Research

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.

Research

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.

Emergency Preparedness

Resources for Parents

Parent Toolkit

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.

Go to the Parent Toolkit

Kids Club

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.

Learn more about Kids Club

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.

Register for Teens Together: A Night to Chat

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.

Register for Teen Game Night

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.

Learn More about Camp for Victory

Events

Visit our events page to learn more about opportunities to get involved and meet others in the community.

Events

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