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May 18, 2013

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May 18, 2013

I first came across the Endometriosis Association when I was diagnosed (belatedly, as so often happens) with endometriosis. I became a member and received the newsletter and publications, and right away I was impressed by the combination of “heart” and science in the EA—the commitment to building a support community for women with this mysterious disease while serving as a catalyst for groundbreaking scientific research. I was even more impressed when the EA uncovered the link between endometriosis and environmental pollutants like dioxin, which helped the medical community to understand the misnamed “career woman’s disease” in a much broader way. The more I learned about the EA’s work—the collaborations between laypersons and doctors, the building of a global support community, the careful data gathering, and the independent fundraising for cutting-edge research--the more respect I had. In fact, I found the EA’s approach so remarkable that I wrote a sociological article about it and documented the organization’s history so that it could serve as a model for others. While doing this, I read many, many personal testimonies about the EA’s life-changing work. I’m now an advisor to the EA, and I strongly recommend the EA to anyone who wants the best information and support relating to endometriosis. The EA’s work has always been mostly membership-funded, and while it stretches every dollar to the maximum limit, it would certainly benefit from more funding. My personal experience and my research both tell me that becoming a member and making any donation will have a huge multiplier effect.

Ways to make it better...

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

find more funds and staffing to support its work

More feedback...

Will you volunteer or donate to this organization beyond what is required of advisors?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

December 11, 2012

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December 11, 2012

I learned about the Endometriosis Association after I was diagnosed with this disease. This organization helped me so much and I learned accurate information in helping me deal with this disease. Just having someone understand what I was going through was very encouraging to me. After reading the Endometriosis Sourcebook, learning information, changing my diet, and talking with other women, I felt better educated to deal with the medical problems I face associated with endometriosis. My husband and I have supported the Endometriosis Association for years and I encourage you to do as well. I recently became a board member and I am looking forward to educating and encouraging other women with endometriosis that need help as they deal with their diagnosis. I recommend you to look at the website at www.EndometriosisAssn.org or read the Endometriosis Sourcebook for more information.

More feedback...

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?

Life-changing

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?

2012

February 26, 2012
1 person found this review helpful

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Review from Guidestar
February 26, 2012
1 person found this review helpful

I remember when I was finally diagnosed with Endometriosis. I had so many questions, but no one seemed to have the answers. I remember sitting in the waiting room of the doctors office and I picked up this yellow brochure for the Endometriosis Association. Later that day, I contacted them. It was life changing for me. Not only did I have a wealth of information and knowledge at my finger tips, but there were people who truly understood what I was going through by having this disease. As a member of the EA, you have access to the best information out there! The books, newsletters, healthcare provider list, programs and the ground breaking research are what truly make the difference. I have personally been involved for the past 5 years by serving on the board and I have seen first hand just how much goes on each and every day. I would encourage you to get involved by becoming a member or a donor. www.endometriosisassn.org

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

September 27, 2011
1 person found this review helpful

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September 27, 2011
1 person found this review helpful

As a disease, endometriosis is plagued by misinformation, taboo, and delayed diagnosis. There is no cure, the symtoms are often misunderstood, and many treatments have serious side effects. There are huge needs for patient advocacy and support to correct the multitudes of bad information out there, and the Endo Association fills that gap and more.
I first connected with the Endometriosis Association when I was diagnosed with the disease as a teenager and was spending most of my days in pain. I benefited from the Association's books and, as a member, I have learned a lot from their incredibly informative newsletters which also connected me to an international community of women with endo. The books are the BEST information out there on endo. After volunteering for EA, I recently joined the board and can say that, from the inside, the organization is even more impressive. EA is funding groundbreaking research, and has had its own groundbreaking discoveries, such as the first-time-ever research-proven link between dioxin and endo. Mary Lou Ballweg, the Executive Director, works tirelessly on behalf of women and girls with endo and in her time since founding the organization has producted amazing shifts in the way the disease is understood and treated. However, much more needs to be done! Get involved by joining as a member, reading a book by the Association, or being a donor: www.endometriosisassn.org.

The Great!

I've personally experienced the results of this organization in...

I am a member and benefit from their information-packed newsletters, book, and support system. It is worth it to become a member -- you get a ton of resources and feel connected to others and empowered by the information you have access to!

Ways to make it better...

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

Somehow make the funds flow more easily. Donate now - it will really make a huge difference! www.endometriosisassn.org

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