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A new collaborative community collective for EDS is here! EDS S.H.A.R.E.
is where patients, providers, and advocates come together in a joint effort to build a collection of the best resources on hypermobility, EDS, and its common comorbidities.
Short guides written by an EDS expert doctor to share with your doctors, “Diagnosing Joint Hypermobility for Non-Specialists“, “What Your Specialists Need to Know” and “Medical Care of Hypermobile Patients“
One page guides written by expert doctors courtesy of Bobby Jones CSF on EDS, dysautonomia, or POTS, and Chiari malformation.
Best AppsHere’s a list of some of the best apps to use when you have EDS/HSD or other conditions like POTS, MCAS or other health and chronic conditions.
EbooksDownload helpful patient-focused resources and ebooks, plus an article with audio on how to locate credible medical info online, Calling Dr. Google is Not a Good Idea.
AccommodationsHere’s information on getting work accommodations if you are employed. Or if you need help for the students and kids with EDS in your life.
Document ItTracking document for EDS symptoms and other templates to track medical data to aid in preparation for doctor appointments, monitor progress, detect patterns, and gather data when you’re forced to research your own illness.
Get involved in the movement to help find answers faster through community sharing. #Sharingiscaring
The EDS Joint Effort is the definitive platform for all things Ehlers-Danlos Syndrome (EDS) and related conditions. This expansive repository offers an array of resources, from the latest research to practical guides, all easily searchable living library through our intuitive companion tool. Designed by patients for patients, with contributions from expert providers, and patient advocates, Joint Effort facilitates a seamless exchange of knowledge and support. By connecting insights and empowering our community, we enhance understanding and drive advocacy. We believe through collaboration and sharing information is how we will get through this, together.
The information provided by EDS S.H.A.R.E. and EDS Joint Effort is not medical advice. It is intended for informational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding any medical condition. EDS Joint Effort, its producers, and its contents are not liable for any actions taken based on the information provided, and all users agree to hold harmless EDS Joint Effort and all products, producers from any claims arising from the use of the information provided. This information is not designed to replace a physician’s independent judgment about the appropriateness or risks for a given patient. Always consult your doctor about your medical conditions. EDS S.H.A.R.E. does not provide medical advice, diagnosis or treatment. Use of the site is conditional upon your acceptance of our Terms of Use and Privacy Policy as stated.
Copyright © 2026 EDS Joint Effort. All rights reserved.
Think of this like a roadmap on surviving EDS. It tells you where to go next, and what you need to know now. It's a GPS system for Zebras! Choose from the links below to learn more...
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