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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

24 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.

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!!!

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!!!

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!!!

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!!!

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!!!

Jason54

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.

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.

Bonnie47

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.

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.

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.

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.

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.

Kelly101

Volunteer

Rating: 5

It was a very positive experience.. Highly recommended.

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.

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

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