Resources for hEDS 

Please note that the following is not meant to be a comprehensive list. focused on what I thought were the more accurate and helpful resources for people living with hEDS. Click on the underlined words to open a website in another window.

Books

• "Disjointed: Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders" by Diana Jovin – A thorough, patient-focused guide written by someone with lived experience.

• "Living Well with Ehlers-Danlos Syndrome" by Isobel Knight – Offers practical advice on managing daily life with EDS.

• "Hypermobility, Fibromyalgia and Chronic Pain" by Alan J. Hakim, Rosemary J. Keer, and Rodney Grahame – Written by leading experts in the field.

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Websites and Medical Information 

• The Ehlers-Danlos SocietyLeading international nonprofit providing educational resources, webinars, diagnostic criteria, and specialist directories.

• GeneReviews: Ehlers-Danlos Syndrome, Hypermobile Type A peer-reviewed medical overview used by clinicians and researchers.

• Hypermobility Syndromes Association (HMSA)UK-based charity offering information, support groups, and webinars for people with hEDS and HSD.

• Chronic Pain Partners / EDS AwarenessOffers webinars, patient stories, and provider education on EDS and comorbid conditions.

Facebook Groups (Private/Moderated)

Search by name on Facebook; most require answering screening questions before joining.

• “Ehlers-Danlos Syndrome (EDS) Support Group”

• "Ehlers-Danlos Awareness"

• “EDS & POTS & MCAS (Trifecta) Support Group”

• “hEDS & HSD Women’s Support”

• “Parenting Kids with EDS / Hypermobility Spectrum Disorder”

• “Hypermobility & Chronic Illness Research and Education” – More academically focused

• Local Facebook groups exist in many cities

Listservs & Forums

• Inspire EDS Community Search for Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders: A long-standing discussion forum hosted in partnership with The Ehlers-Danlos Society.

• Reddit: r/ehlersdanlos: A lively, peer-moderated community for discussion, sharing frustrations, and advice.

• EDS Wellness Forums: A forum that focuses on integrative and whole-body approaches to living with EDS.

Clinicians and Specialists 

• EDS Clinician Directory: Available via The Ehlers-Danlos Society’s website. Includes doctors familiar with hEDS diagnosis and management around the world.

• HSA Practitioners List (UK and some international): Hypermobility Syndromes Association.