Ehlers Danlos (and related) Resources

EDS Resources

Organizations/Institutes:

Ehlers Danlos Society. A nonprofit serving the global community to effect change and progress in the world of EDS. Patient support, resources, research.

National Institutes of Health, Rare Diseases.  Disease education, research and information.

EDNF Center for Clinical Care, Research.   Virtual center to provide comprehensive care for patients, professional education for physicians, and EDS research.

Mast Cell Activation Syndrome, Part 1. Immunological condition associated with EDS. Physician Talk, Dr. Lawrence Afrin.

Mast Cell Activation Syndrome, Part 2.  Physician Talk, Dr. Anne Maitland.

Dysautonomia/POTS.  Automatic disorders associated with EDS.  Physician Talks.

Chronic Pain Partners.  Webinars, support groups, articles. Helps EDSers find or organize support groups in their local communities.

Invisible Disabilities Association.  Encourages, educates and connects people and organizations touched by illness, pain and disability around the globe.

Integrative Health

EDS Wellness.  A nonprofit organization promoting health education, integrative health care, and wellness strategies for EDS and other related diseases.

National Center for Complementary and Integrative Health. Researched based approaches to complementary care.

Foundation for Alternative and Integrative Medicine.  Identifies breakthrough complementary and alternative therapies, and researches and reports on their effectiveness.

Blogs/Websites:

Our Stories of Strength.  News, book, 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. Strengthening the connections to hope.  Videos, education, support, stories.

The Cusack Protocol. Restoring connective tissues through supplementation.

EDS Life Hacks.  Living well with EDS.

YouTube:

Ehlers Danlos YouTube channel Medical and educational videos from experts.

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.

Other:

Prolotherapy. Non-surgical injection treatment to stimulate tissue healing.

Prepare For Surgery, Heal Faster. Book and CD (not EDS specific).

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Resources (and blogs) may change over time.