EDS TODAY ~ Ehlers-Danlos Advocates

Rating: 5 stars   24 reviews

Address:

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
Write a Review
Donate
Invite Reviews Share This Nonprofit

More Info

http://www.edstoday.org/

Promote This Nonprofit

GreatNonprofits badges allow you to raise awareness of your favorite nonprofits on your own web sites!

Review this charity on
GreatNonprofits

Reviews for EDS TODAY ~ Ehlers-Danlos Advocates

profile
Role: General Member of the Public
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

 
Flag review
(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  

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

 
Flag review
(Nonprofit Staff) wrote:

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!!!

profile
Role: General Member of the Public
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

 
Flag review
Role: General Member of the Public
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

 
Flag review
Rating: 5 stars  

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.

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

 
Flag review
Role: General Member of the Public
Rating: 5 stars  

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.

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

I would love to see it grow and raise more awareness about a condition that can be life threatening. Vital education is needed providing awareness of signs and symptoms that can potentially save a life.

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

 
Flag review
profile
Role: General Member of the Public
Rating: 5 stars  

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.

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

none

Will you volunteer or donate to this organization?

Unsure

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

Life-changing

When was your last experience with this nonprofit?

2013

 
Flag review
Rating: 5 stars  

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.

When was your last experience with this nonprofit?

2013

 
Flag review
Role: General Member of the Public
Rating: 5 stars  

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

Will you volunteer or donate to this organization?

Definitely

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

A lot

When was your last experience with this nonprofit?

2013

 
Flag review