EDS is a collection of inherited disorders affecting the connective tissue which provides support to the skin, muscles and ligaments. The fragile skin and unstable joints found in patients with EDS are the result of faulty or reduced amounts of collagen. This condition was identified over one hundred years ago and is far more common than many widely known rare diseases. While there is no cure, a wealth of treatment recommendations have been published. We hope the resources on this page help patients and providers better understand what can be done to alleviate or reduce symptoms.

American Journal of Medical Genetics March 2017 EDS Issue

These articles covering a wide range of treatment strategies are free to download for a limited time.
Download the PDFs from the table of contents.


  • Chronic Pain Partners offers an online learning session on the 1st and 3rd Wednesdays of each month at 7:30 pm, EST. The session typically lasts approximately 1.5 – 2 hours with the majority of this time devoted to a live Q & A. Sessions are often recorded and posted on their site.
  • The Ehlers-Danlos National Foundation (ednf.org) EDNF now has their own webinar series. The inaugural webinar in October 2014 was "Connecting the Dots Between EDS and POTS", featuring Dr. Peter Rowe & Dr. Satish Raj.

Practical Suggestions

Tips (life hacks) for EDS patients – many of these came from our local members and some were collected from elsewhere online.

Medical Literature - Articles, Chapters, and Abstracts

American Journal of Molecular Genetics

Other Publications


  • Chronic Pain Partners – Offers bi-monthly webinars, surveys, products, and valuable information.
  • EDS Today – An organization with the goal of bringing education, awareness and hope to those suffering with Ehlers -Danlos Syndrome.
  • Center for Ehlers-Danlos Syndrome Alliance
    CEDSA offes general and child centric information as well as a wallet ID card with patient registry linking medical providers to information about your specific type. This can be especially helpful for protecting parents from child abuse allegations.
  • TCAPP.org – The Coalition Against Pediatric Pain has resources for children and their parents. We list it here because chronic pain is one of the most troublesome manifestations of EDS.
  • DINET.org – Dysautonomia Informaion Network is included here because many patients with EDS also suffer from dysautonomia (dysregulation of the autonomic nervous system).


JHDiagnosis is an iTunes free app created by the geneticist Dr. Brad Tinkle to aid health care professionals in diagnosing joint hypermobility.