Research Studies-vEDS

The VEDS Movement is a division of The Marfan Foundation dedicated to  improving the lives of those affected by vEDS. Their website contains  information and resources about vEDS for both patients and professionals , as  well as a number of webinars, emergency resources, and so much more. 

Vascular Ehlers-Danlos Syndrome (VEDS) is considered the most serious form of Ehlers-Danlos syndrome due to the possibility of arterial or organ rupture, and it is important to be prepared for emergency situations.   Here is a link, created by the VEDS Movement, to assist in being prepared for an emergency.

 A dual-purpose card featuring a QR code that directs physicians to our  free CME program and provides clear, concise VEDS information on the  flip side with a QR code to obtain additional information from The VEDS  Movement website. You can print this and bring it to your physicians.  Printed cards will also be available at upcoming symposiums and walks. 

 A crucial tool for our VEDS community members during hospital stays.  This sign will alert healthcare workers about the VEDS diagnosis and  provide essential points for inpatient care. 

 A crucial tool for first responders to have access to, in order to best assist during an emergency. 

FIGHT vEDS is a non-profit focused on vascular Ehlers-Danlos ("vEDS"). We support patients with simple, easy-to-understand information about vEDS. For those without a diagnosis, we help them understand if they have vascular EDS through introducing them to simple testing options. For patients with vEDS, we help them understand the newest research and most cutting-edge treatment options.  

REDS4VEDS  is a global campaign which takes place on the third Friday of May each  year. The aim of the campaign is to help raise the profile of vascular  Ehlers-Danlos Syndrome (vascular EDS).

A UK based non-profit foundation that actively connects vEDS patients with resources they need to help manage their disease.  

Katie Wright talks about her story with vEDS in a blog and vlog, and hosts a podcast called Staying Connected where she talks to others  affected by vEDS.