Reposting from Cortney Gensemer (IG NAME: cortdoesscience) “Exciting NEWS! We launched a new research survey, and are looking for participants. The questionnaire is online, anonymous, and takes approximately 30-minutes to complete. Our aim is to better understand the comprehensive clinical overview of EDS and HSD. The questions relate to your demographics, medical history, and patient experience. We are hoping to gain a large data set, so please share this post with your EDS/HSD friends, family, colleagues, and community! If you have any study related questions, please direct them to the Study Coordinator (see on flyer). We hope the results may help researchers and medical professionals better understand these conditions in the future.” It’s worldwide and all types of EDS can participate. Here’s the link for those interested:

Posted by lori winslow at 2023-09-16 02:47:35 UTC