Survey
We’re Not Confused – The System Is: Community Survey Shouts for EDS/HSD Classification Change
May 2025By Maggie Buckley, BCPA and Christie CoxEDS Patient Advocates and Community Researchers Editor’s Note This article was originally developed as a proposed abstract for submission to The Ehlers-Danlos Society’s scientific symposium. Our goal was to share real data from patients on how the current classification system for EDS and HSD affects diagnosis, care, and […]
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 www.bodysupportstore.com 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 […]
