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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

9 Stories from Volunteers, Donors & Supporters

1 Stacy30

General Member of the Public

Rating: 5

Wonderful support symptom and knowledge base. Very useful organization for those families directly and not directly effected from EDS.

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!!!

General Member of the Public

Rating: 5

EDS Today has helped me understand Vascular Ehlers Danlos Syndrome in a way I could understand and identify with. The people who administer this organization are compassionate, knowledgeable, and dedicated to making the public aware of this sometimes devastating syndrome. Sadly, my son passed away from VEDS at age 22 and this group was right there with me as if he were one of their own. My heart goes out to all who are dealing with EDS and VEDS but I'm thankful beyond words there are organizations out there to turn to for information and support. Thank you.

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. You're in our hearts ♥ Thanks again!!!

Deborah77

General Member of the Public

Rating: 5

My son was recently diagnosed with a type of EDS. EDS Today is a great site to educate patients and the general public on what the disease entails, offers treatment methods, and also raises money for researching treatments and cures of EDS. The board members have been touched by this disease and have made it their mission to help educate others so that lives will not be lost so early.

The website is very easy to navigate, offers easy to understand information, hot links to additional EDS sites, videos, contact info for all EDS organizations worldwide and so much more. It is the central hub. This site is to EDS patients as google is to the common person...a great place to search for whatever you seek.

General Member of the Public

Rating: 5

The members of EDS-Today have been working incredibly hard to bring awareness to the community of a rare and potentially fatal disease. Their commitment has brought knowledge not only to the public but the medical community as well. Helping to decrease a long and arguous process of misdiagnosis and surly helping to save lives. All the while providing personal support to those living with this syndrome and families coping with the loss of their loved one. An amazing and knowledgable organization to say the least.

Melissa162

General Member of the Public

Rating: 5

This organization works tirelessly to inform and educate EVERYONE they can about a terrible disease that so frequently goes un/misdiagnosed until it's too late. They have helped so many understand and cope with this disease.

General Member of the Public

Rating: 5

My son has EDS. There is not a lot of information and support available on the web. It is an under diagnosed crippling disorder. EDS TODAY provide research information, awareness, advocacy and education. Not only that they are here for us. Having an invisible illness is a very isolating condition to have. Having people to talk to that understand is vital. I am grateful for the support, understanding and education that EDS TODAY provided to me and my family and many people I know that have needed support.

Ray_12

General Member of the Public

Rating: 5

Being a family member of a young man who lost his life by not being correctly diagnosed, I want to let everyone know how important these advocates are in getting the word out and saving lives. The support they provide to people with EDS and their family members is second to none.

General Member of the Public

Rating: 5

Its a amazing cause that has helped bring awareness to something that has affected a beloved cousin we had the unfortunate loss of several years ago.

General Member of the Public

Rating: 5

I have eds and this is great place for update information and support this people are my eds family they help us al get through another day