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EDS TODAY ~ Ehlers-Danlos Advocates

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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

2 Stories from Volunteers, Donors & Supporters


Professional with expertise in this field

Rating: 5

EDS Today is a great reference for me in my daily work in the world of Physical Therapy for both recognizing signs of possible undiagnosed connective tissue disorders as well as a reference for providing patient education. Keep up the great work building awareness of EDS and spreading the word to all populations. You are great at what you do.


Professional with expertise in this field

Rating: 5

I have known Cathy Bowen and EDS Today for many years. They have helped many many people with Ehlers-Danlos Syndrome through their non-profit organization. I have had the pleasure of working with Cathy on EDS Today as a Board of Directors member. Today I help when people have questions about speech language pathology, especially in regards to swallowing issues, articulation, speech, hearing and language.