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Resources

The follow sites might help people that have been diagnosed with EDS to find resources and information that are so essential to getting proper care. We need to be our own experts, and those sites offer a wealth of information for our community.

EDS Awareness

https://www.chronicpainpartners.com
Chronic Pain Partners (EDS Awareness) offers webinars about every EDS topic and presents almost every EDS expert. A great source of information. EDS Awareness has also greatly supported this film and hosted two online screenings for the community.

EDS Society Conferences

https://www.ehlers-danlos.com/past-events/
You can find all presentations (videos and powerpoint files) of all past International EDS conferences on the site of the Eds Society. A wealth of information about all EDS topics. 

Bobby Jones Foundation

https://bobbyjonescsf.org/video-library/
The Bobby Jones Foundation has lots of videos specifically about neurological complications of EDS, like cranio-cervical instability and Chiari. 

Dysautonomia International

https://vimeo.com/dysautonomia
Dysautonomia International has lots of videos online about all sorts of autonomic dysfunctions.

Overview of new classification and comorbidities

https://www.ehlers-danlos.com/2017-eds-international-classification/

The Ehlers-Danlos Society provides access to a whole journal that features the new classification, management of EDS types and comorbid conditions. This journal basically summarizes the recent knowledge of EDS and comorbidities and can get a new doctor up to speed with only a few publications.

EDS Wisconsin

Website

EDS Wisconsin is an organization supporting people with EDS in Wisconsin

EDS Wellness

Website

My friend Kendra is the CEO of this organization based in Maryland. Her focus is on improving quality of life of people with EDS.

And if you are interested in German resources (Yes, I am German!), then check out my Blog or the website of the German “Ehlers-Danlos Initiative.”