Know the Signs, Fight for Victory
Emergency Preparedness Kit This kit is your tool to help you be prepared in the event of an emergency. We suggest putting the completed packet in a brightly colored envelope or folder so it is easy to find. At home, keep it near the door so it is handy for Emergency Medical Services (EMS) and […]
Download a PDF of our Emergency Alert Card which you can carry in your wallet.
Ehlers-Danlos syndrome is a group of connective tissue disorders that are characterized by unstable, hypermobile joints, loose, “stretchy” skin, and tissue fragility. It is caused by a defect in the connective tissue. The fragile tissues and skin and unstable joints found in Ehlers-Danlos syndrome are due to a gene mutation in collagen. What other names […]
This Parent Toolkit is a resource for parents of children with Marfan, Loeys-Dietz, VEDS, or another genetic aortic condition. It offers resources to help you deal with your child’s school, doctors, and healthcare, and guide you to additional resources for information and support.
Use this form to request printed versions of our fact sheets, brochures, and booklets.