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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

8 Stories from Volunteers, Donors & Supporters

Susan266

Client Served

Rating: 5

EDS Today is a wonderful organization that helps raise awareness and information about Ehlers-Danlos Syndrome. The one thing that sets EDS Today apart from other charities is its human connection. They are there with you through it all and truly "walk" with you.....and that makes all the difference. Susan Ginley

Comments ( 1 )

profile

info 10/21/2013

Sue, Thank you so very much for taking the time to post this kind, touching message. We deeply appreciate it. Thanks again!!!

Client Served

Rating: 5

EDS Today is wonderful source for patients that suffer from Ehlers Danlos Syndrome.

Comments ( 1 )

profile

info 10/21/2013

Thank you so very much for taking the time to post this kind message. We deeply appreciate it. Thanks again!!!

Amy_121

Client Served

Rating: 5

My daughter was diagnosed with Vascular Ehlers-Danlos Syndrome at age 6. I had so many questions and was so scared and EDS today gave me the support I needed as a parent. This is where I turn with questions and concerns about my daughter's health.

Comments ( 1 )

profile

info 10/21/2013

Amy, Thank you so very much for taking the time to post this kind message. We deeply appreciate it. We're thankful that we were able to be here for you and your daughter. You're in our ♥ Thanks again!!!

Client Served

Rating: 5

This organization has helped me cope with the unexpected death of my 13 year old son. We did not learn that it was from ehlers - danlos until after the autopsy. Having this organization available helped me to understand this syndrome and be an avenue to one day help others.

Client Served

Rating: 5

This organization has done a tremendous amount to help me and my family deal with a crippling disease. I am truly grateful for all they do.

Dee Ann D.

Client Served

Rating: 5

I remember when I first found the EDS site and was so lost with life.i had just lost my rob and had no clue how I could manage. I didn't know what to do then I met all of you. You showed me a new outlook on my life. And how to become a stronger fighter. I've never met such a wonderful caring strong group of people.i now call my family. I'm so happy that GOD helped me in finding all of you way he did. Amazing how our life's work. I went from being a lost soul to a stronger person because of you ,my eds family I love you linda Lenz and Cathy Bowen

Client Served

Rating: 5

I cant say enough about EDS Today and the help that we have received from them. I only wished they had been around when my daughter was born. Thank you for all your help and advice.

Client Served

Rating: 5

All the ladies on the board of directors are wonderful, compassionate and so helpful. Especially Cathy she has gone above and beyond to educate me on all aspects of EDS, so that I could advocate for my child. I am forever grateful. This knowledge that I obtained from her will help to save my child's life.

Review from Guidestar