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Top Ten Reasons EDS SUCKS!

The votes are in! One hundred and sixty-seven (167) of you responded to our survey about the things that SUCK about EDS. What made it into the top spot as the worst of all? Where did your dissatisfactions rank? Scroll down to find out! How we tallied the results: Each respondent received the same 19 […]

New Ehlers-Danlos Syndrome Survey

Hello! My name is Katie Bealka, and I am a graduate student in the Brandeis University Genetic Counseling Master’s degree program. I am looking to better what life is like for emerging adults living with Ehlers Danlos Syndrome (EDS), either the classical or hypermobile type, and need your help. Have you been diagnosed with either […]

Free Webinar – “Results of the EDS Awareness World-Wide Survey” – RECORDING AVAILABLE

Watch the recording of this free webinar. Sponsored by  TOPIC: Results of the EDS Awareness World-Wide Survey PRESENTERS: John Ferman and Deanna Hamm John Ferman and Deanna Hamm (father and daughter) are co-founders of the EDS Awareness Program. There were 2544 respondents to this World-Wide survey from 26 countries. The specific results were presented and discussed during […]

EDS Survey Results will be presented on May 17, 2016

STATUS: World-wide EDS Awareness Survey — A summary booklet is currently being distributed to doctors and attendees at the EDSI Symposium in New York City. We received > 2500 responses from 26 countries. The data collected from this survey is being analyzed and will be presented in our upcoming webinar scheduled for May 17, 2016.   WEBINAR […]

Take Survey on Gastrointestinal Issues with EDS or CTDs—Expires on 12/31/2014

Your input is needed for this very important EDS survey! Follow the link at the bottom of this article to take the survey. This survey on gastrointestinal issues is being conducted by a group of doctors at Beth Israel Deaconess Medical Center / Harvard Medical School. The goal is to better understand the bowel and stomach issues that might […]