Mission: Ehler-Danlos Syndrome (EDS) is a genetic connective tissue (collagen) disorder that causes debilitating pain, joint dislocations, arterial/organ ruptures/dissections and has resulted in numerous deaths from a lack of knowledge.
EDS TODAY was born in 2000, out of dire necessity to help those with EDS acquire the latest, most up-to-date medical information and contacts in one resource guide, a newsletter. Which is written for, by and about people with EDS, each page is filled with many voices from around the world, sharing their experience, advice, and support for one another. In addition to this newsletter, we have worked tirelessly over the last ten years on outreach, advocacy, support and helping to raise funds for ongoing scientific EDS research. We are fully aware that the ONLY way to improve the future and the quality of life for the EDS patient is through RESEARCH. We are committed to this goal!
EDS Today is proud to say that we continue to be staffed 100% by dedicated volunteers.
This non-profit group for EDS is extremely passionate and devoted group to bring awareness towards identifiy the early signs of EDS and treating them quickly so other families do not have to experience what our family and many others have gone through needlessly. My cousin David Bowen passed away from EDS due in large part from the Doctors that treated him did not know the signs of EDS. If they were better educated and more informed they could have diagnosed David with EDS and treated him much differently before he had to suffer so much.