Resources

EHLERS-DANLOS RESOURCES

Organizations/Institutes:

http://ehlers-danlos.com/ A nonprofit organization serving the global community to effect change and progress in the world of Ehlers-Danlos Syndrome.

https://rarediseases.info.nih.gov/diseases/6322/ehlers-danlos-syndrome  Disease education, research and information.

http://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/ Patient support, clinician resources, research.

http://www.chronicpainpartners.com/  Webinars, support groups, articles. Helps EDSers find or organize support groups in their local communities.

Blogs/Personal Websites:

http://strengthflexibilityhealtheds.com/ A digital wellness magazine. Offers stories of hope, health and medical information, nutrition and mind-body resources.

http://ourstoriesofstrength.com/category/news/ Personal stories of strength.

http://prettyill.com/ The Driscoll Theory. Dr. Driscoll, a doctor (EDS patient) offers help and hope for people with EDS and related conditions.

https://themighty.com/ The Mighty, facing disability, disease and mental illness. 

Facebook Groups:

https://www.facebook.com/ehlers.danlos/ The EDS Society.

https://www.facebook.com/groups/edsandaloe/ The Cusack Protocol. Restoring connective tissues through supplementation.

https://www.facebook.com/groups/edslifehacks/ EDS Life Hacks.

Books on Amazon:

Joint Hypermobility Handbook Dr. Brad Tinkle.

A Multiple Discipline Approach To Managing EDS.  Isobel Night.

Zebras of Hope: A guide to living with Ehlers-Danlos Syndrome. Ellen C. Kelleher.  Personal stories of living with EDS.

Living Life to the Fullest with EDS  Kevin Muldowney. A PT’s guide (and protocol) to living better with EDS.

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This is a sampling of available resources.  Resources (and blogs) may change over time. This list is not meant as an endorsement one way or another.