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Emergency Preparedness

Living with Marfan syndrome, Loeys-Dietz, Vascular Ehlers Danlos (VEDS), or any related genetic aortic condition means that emergency medical providers may need life-saving information about your condition in order to accurately treat you in an emergency.

It also means that family, friends, and caregivers should have quick, clear, and easy access to medical information that help them guide your care, should you need their assistance.

For years, we have encouraged the use of an emergency medical kit and wearable medical jewelry as common and effective ways to help ensure members of the Marfan and related conditions community get the kind of support that is needed.

Through our partnerships with Backpack Health and Sticky J, there are new ways to communicate this potentially life-saving information, no matter where you may be.

Backpack Health is an app where you can store your important medical information so that you have access to it anywhere. The app also makes it easy for you to share that information with the people in your life who need it – care providers, family, friends, etc. This allows anyone with your private link to access information they can use to help support your medical care, in case of an emergency.

To take the easy and comfort of the Backpack Health share card technology a step further, Sticky J now offers medical alert jewelry that has room to include a link to your Backpack Health share card. It’s like having your emergency preparedness kit follow you wherever you go.


Plus, Sticky J is offering a discount to members of the Marfan and related conditions community, using code MARFANSJ20. In addition, Sticky J will donate a portion of the proceeds to the Foundation.