Other Resources

We don't fight vEDS alone

Find other websites dedicated to EDS and vEDS.  If you know of any additional sites please contact us so we may add them!

 

Annabelle's Challenge

An ambitious group from the United Kingdom dedicated to the vascular EDS cause!

Click here for Annabelle's Challenge website

The Ehlers-Danlos Society

Formerly Ehlers-Danlos National Foundation (EDNF).  While they have not been as active in funding research in vascular EDS, there is plenty of helpful information on their page.  In particular, they have an online community and message board for patients with EDS (through inspire.com) and information on the EDS Center for Research & Clinical Care in Baltimore, MD.

Click here for the Ehlers-Danlos Society website

You aren't alone in fighting vascular Ehlers-Danlos syndrome.  This blog is dedicated to the journey of a vEDS patient.  It also includes podcasts with interviews of other vascular EDS patients sharing their stories!

Ryan's Challange

A non-profit dedicated to vEDS based out of College Station, Texas.  They are committed to fundraising and trying to find a cure.

Click here for Ryan's Challenge 

EDS Network C.A.R.E.S.

A non-profit organization run by Lynn Sanders.  Their organization is for all types of Ehlers-Danlos Syndrome and they have been active in funding many vascular EDS projects in the past!

Click here for the EDS Network C.A.R.E.S. website

Vascular Ehlers-Danlos Syndrome Awareness UK

A United Kingdom based website created by a vascular EDS patient Mr. M J Smith.

Click here for the Vascular Ehlers-Danlos Syndrome Awareness UK website

EDS Awareness

Founded in 2011 by John Ferman and his daughter Deanna, Ehlers-Danlos Syndrome Awareness is a non-profit organization dedicated to helping support individuals with all forms of EDS.  We especially recommend looking at their Directory of Local Support Groups, which can be used to find an EDS support group near you!

Click here for EDS Awareness website

DEFY Foundation

Founded by the Yasick family in 2014.  They are active in the vEDS community with similar goals to FightEDS-- raising awareness and furthering research in vascular Ehlers-Danlos syndrome.

Click here for the DEFY Foundation website

 
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