EDS TODAY ~ Ehlers-Danlos Advocates

Rating: 5 stars   24 reviews

Issues: Health, Cancer

Location: PO Box 1382 Mays Landing NJ 08330 USA

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.

2013 Top-Rated Nonprofit
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Community Reviews

Rating: 5 stars  

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

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

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

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

Was this review helpful? 

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

Rating: 5 stars  

1 person found this review helpful

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

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

Was this review helpful? 

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

Rating: 5 stars  

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

If I had to make changes to this organization, I would...

I would not change a thing...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

Was this review helpful? 

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

Rating: 5 stars  

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.

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2013

Was this review helpful? 

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!!!

Rating: 5 stars  

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.

If I had to make changes to this organization, I would...

No changes! I would just want more people to be aware of this great organization.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

Was this review helpful? 

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!!!

Role: Professional with expertise in this field
Rating: 5 stars  

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.

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

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.

If I had to make changes to this organization, I would...

Maybe add a section talking about the misconceptions people have of EDS, like how CPS is sometimes called due to the bruising, how docs don't think people are not numb (due to absorption issues) and so they go through procedures in pain, etc)

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Role: Professional with expertise in this field
Rating: 5 stars  

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.

If I had to make changes to this organization, I would...

Get them more funding to continue their mission educating health care professionals and people with Ehlers-Danlos Syndrome, especially the vascular type of EDS

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

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.

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

Was this review helpful?