Organizations/Institutes: A nonprofit organization serving the global community to effect change and progress in the world of Ehlers-Danlos Syndrome.  Disease education, research and information. Patient support, clinician resources, research.  Webinars, support groups, articles. Helps EDSers find or organize support groups in their local communities.

Blogs/Personal Websites: A digital wellness magazine. Offers stories of hope, health and medical information, nutrition and mind-body resources. Personal stories of strength. The Driscoll Theory. Dr. Driscoll, a doctor (EDS patient) offers help and hope for people with EDS and related conditions. The Mighty, facing disability, disease and mental illness. 

Facebook Groups: The EDS Society. The Cusack Protocol. Restoring connective tissues through supplementation. 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.


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.