The hub

Our goal is to not only bring, knowledge, personal experience and community together, but to also promote a central hub of relevant information with current links to websites, blogs and EDS related events globally.  While the information may be a little disorganized at first, I hope to streamline your experience with time.  Please feel free to contact me with any suggestions.  We are here to serve your EDS Simple Needs!

If you would like your group or website featured here please email me hello@edsneeds.com


Have you seen The Hypermobile Yogi, Moving Naturally with Hypermobility?  Caught the fitness inspiration online of #Just5Minutes?  Then you NEED to see EDS Wellness!  I've never seen a more well put together hub of information, and there is a reason for that.  The inspiration and brains behind these sites and stories comes from Kendra Neilsen Myles, CHES, Director and Founder of EDS Wellness, Inc.  She has been volunteering in the EDS community for over a decade, and her work and passion for helping has provided a beautiful layout for those in search of answers.  Click on the icon and bookmark, because there is so much information you won't want to forget where you left off!  It's everything you want in one spot!


Have you seen the printable materials section of the EDNF?  If you're up for a good breakdown of the varying syndromes under the EDS umbrella I've linked directly to the printable tri-fold brochure.  Click on the icon!                                                                                                                    


 

National foundations & Support organizations

The US and UK have their own individual foundations dedicated to information and current research.  Please check our US advocates

 

International Pain Foundation, your Power of Pain Headquarters.

The As well as our UK advocates         

 

 

The GARD site has a rather comprehensive listing of the definition of all types of EDS if you browse alphabetically.  The link below s specifically for EDS.

 

Rare Connect links Rare Disease patients globally

 

 

 

Hypermobility Syndromes Association is UK based and works with EDS UK.  They have a wonderful community involvement calendar and is a wealth of information.  

 

The French EDS association, or the Association Francaise des Syndromed D'Ehlers-Danlos

 

 

The Swiss EDS association, or Association Suisse des Syndromes D'Ehlers-Danlos

 

 

 

The EDS association is Spain has a website that appears to be down, however they do have an email address the is hopefully operational.  Please let me know if you have any information about the status of their organization for our members in Spain.  Please use asedh@asedh.org in the mean time.

 

 

The EDS association for the Netherlands, Vereniging van Ehlers-Danlos patiënten.

 

 

German EDS association

 

 

 

EDSers United is based out of New Jersey and has a wonderful section on nutrition for zebras, as well as how to get involved.

 

 

The EDS association of Belgium

 

 

EDS Awareness has a compilation of EDS support groups across the United States.


EDS and VEDS definitions

 Ehlers-Danlos Syndrome as defined by the Genetics Home reference, U.S. National Library of Medicine

Ehlers-Danlos Syndrome as defined by the Genetics Home reference, U.S. National Library of Medicine

The following links are to websites that may help give you perspectives on EDS as a whole.  Not every page contains the same information.  I have found browsing them all to be a little more comprehensive and wanted to share them here.

 

Molecular Genetics Article about Vascular EDS from the National Center for Biotechnology Information.

 

Mayo Clinic Definistion of EDS, this article also touches breifly on VEDS.

 

 

Here is the descriptionof the gene COL3A1 which causes Vascular EDS.

 

The National Organization of Rare Disorders definition of EDS and its many variances.  There is also a list of support Organizations towards the bottom of this page which I have also listed above.

 

 


 

SUPPORT & Community GROUPS  

 

The Herd's Nerd

I'm so excited to link and support The Herd's Nerd newest Facebook Group!  This group is created and fueled by on of the most intelligent, analytic minds that I have seen in the EDS online community.   There is so much great information on there already, and I cannot wait to link to, and see, what comes up here.  Go bookmark this page for quality and pertinent information about your EDS Needs!  Click on the Zebra to connect.

 

Ireland has a Facebook group site.