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 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

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info (Nonprofit Staff) wrote:

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  

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? 
info (Nonprofit Staff) wrote:

Thank you so very much for taking the time to post this kind message. We deeply appreciate it. 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? 
info (Nonprofit Staff) wrote:

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!!!

Rating: 5 stars  

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.

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? 
Rating: 5 stars  

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.

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? 
Rating: 5 stars  

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

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? 
Rating: 5 stars  

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.

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

Not change a thing.

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? 
Rating: 5 stars  

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.

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?

2009

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