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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Health, Health Care, Nerve, Muscle & Bone Diseases

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.

Community Stories

5 Stories from Volunteers, Donors & Supporters

Melissa164

Volunteer

Rating: 5

Eds today is a great organization that has help me and my family have a better understanding of eds.

Volunteer

Rating: 5

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.

Kelly101

Volunteer

Rating: 5

It was a very positive experience.. Highly recommended.

Volunteer

Rating: 5

EDS Today always has up to date information and is always willing to research answers and treatments for so many. They truly go above and beyond.

Volunteer

Rating: 5

EDS Today is full of passionate and caring board members that truly care for not only those that have EDS but their family members as well.

Review from Guidestar