About the May 2016 Symposium

The Ehlers-Danlos Society held its international symposium on Ehlers-Danlos syndromes in New York City, May 3–6, 2016, generously funded by EDS UK and the Ehlers-Danlos Society. The symposium was held in alliance with the EDS consortium in Ghent and medical professionals internationally.

Its primary goal was to reclassify the diagnostic criteria for all the types of Ehlers-Danlos syndromes. The symposium efforts will include published guidelines for medical professionals to use once a diagnosis has been reached as a universal guide for management. (Supplement will be published in March 2017, American Journal of Medical Genetics.)

This work will change the lives of those with EDS. Updated diagnostic criteria will increase and improve diagnosis, and the management guidelines will finally ensure that there is an internationally agreed-on treatment plan that doctors will be unable to ignore. Because of projects like this, our community will build the foundations we need to ensure more research, funding and recognition.

Very generous private donations allowed us to get the symposium underway. We are extremely grateful for the support, but more needs to be raised to make this most important event a complete success. Help us by donating today. Anything you can give will be very much appreciated and ensure we are able to hold these critical symposiums every two years. To donate, please visit our giving page.

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