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OTHER RESOURCES

We don't fight vEDS alone

Find other websites dedicated to EDS and vEDS

Annabelle's Challenge

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

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.

DEFY Foundation

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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.

The Translucent One Blog and Podcasts

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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!

The vEDS Movement​

 

A vascular Ehlers-Danlos-specific initiative at the Marfan foundation to drive awareness, support resources, and research for vEDS.

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