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Review for Endometriosis Association, Inc., Milwaukee, WI, USA

Rating: 5 stars  

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.

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

find more funds and staffing to support its work

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Role:  Advisor