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Join our facebook group to connect with others on the same journey as you or find a support group in your area by searching the Ehlers Danlos Society's Support Group Directory. Connecting with others helps to ease the burden of figuring it out all by yourself.
Search our list of providers to find a geneticist or other specialist that is known to diagnose Ehlers Danlos Syndromes. There are providers listed that are close to SOMD, do telehealth visits, or are leading specialists that some of our members travel to see.
Contact the provider to set up an appointment. Typically there will be detailed paperwork you need to fill out, be prepared for that.
The 2017 hEDS checklist explains the requirements to receive the hEDS diagnosis if your genetic testing does not come back with any known gene mutations.
Take a look at our list of outside resources to assist you in learning more about these conditions.
Ehlers-Danlos Medscape.docxEDS Overview and Information
EDS Overview and Information
A handout some were given to explain a little bit about EDS and to help prepare for an appointment.
What is EDS.docxWhat is EDS?
What is EDS?
This handout went into more detail about the different types of EDS.
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