Oops! You must enter a search term greater than 3 characters.

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
24 Reviews
12345
Write A Review
October 21, 2013
1 person found this review helpful

more

October 21, 2013
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.

More feedback...

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

October 21, 2013

more

October 21, 2013

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.

More feedback...

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

October 20, 2013

more

October 20, 2013

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.

Ways to make it better...

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)

More feedback...

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

October 20, 2013

more

October 20, 2013

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.

More feedback...

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

October 20, 2013

more

October 20, 2013

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.

More feedback...

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

October 20, 2013

more

October 20, 2013

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.

Ways to make it better...

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.

More feedback...

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

October 20, 2013

more

October 20, 2013

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.

Ways to make it better...

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

none

More feedback...

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

October 20, 2013

more

October 20, 2013

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.

More feedback...

When was your last experience with this nonprofit?

2013

October 20, 2013

more

October 20, 2013

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

More feedback...

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

Write A Review

Filter by reviewer role:

Support This Nonprofit

Help this nonprofit get more reviews

5 tips for getting reviews

5 tips for getting reviews...

  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
  2. Putting a link on your Web site
  3. Including a link in your email newsletter
  4. Putting a link in the signature of your email
    Putting a link on your facebook page and status updates
  5. Tweeting out a link to your twitter followers