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DES Action USA

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Nonprofit Overview

Causes: Cancer, Health, Public Health

Mission: The mission of DES Action is to identify, educate, empower, and advocate for DES-exposed individuals.

Results: DES Action successfully advocated for continued DES research funding of the DES Follow-up Study carried out by the National Cancer Institute. We stay in touch with the researchers and share their results to inform those who need to know about health risks caused by DES exposure.

Geographic areas served: We are a national organization in the United States but we have members in primarily English-speaking countries around the world.

Programs: Our organization began in 1978 and provides information packets and doctor referrals for individuals exposed to the anti miscarriage drug, diethylstilbestrol (DES). We also have a newsletter providing accurate and timely information of interest to those exposed to DES, as well as a TOOLKIT for so-called DES Daughters (those exposed in the womb) - to help them communicate better with their doctors.

Community Stories

122 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

Being a DES daughter is something that never goes away. I have worried about the side effects and health risks I would be facing since I was about 18. Now that I am 55, we are finding out that the health issues related to DES exposure will continue for a lifetime. DES Action National has been the greatest source of information for me. I had all the fertility issues, then the hysterectomy and now worry about my increased risk for breast cancer. When I need to know the facts, this is where I come. I am more informed and better prepared to protect my health because this organization makes information available that is not available elsewhere. I can count of Des Action to provide the information I need to be an informed and proactive about my healthcare.

Martine V.

General Member of the Public

Rating: 5

DES action is a vital organization, not just for women who, like me, were exposed to this horrible drug and have had to deal with the consequences, such as a son's prematurity, and will have to deal with unknown future effects, such as increased breast cancer risks. It also serves a vital role for health care providers. Sadly, I find that physicians frequently do not know much, if anything, about DES exposure, and thus I was classified as not high risk when pregnant with my first child. I still encounter OBGYNs who do not know any more what DES is or wave it off as something that was only prescribed in the fifties. But besides this key function, DES Action also helps inform the larger public about the risks of chemical exposure during pregnancy and beyond (particularly of endocrine disrupters), which is highly relevant to everyone and shows DES to be a crucial case study with farreaching implications.

Suzanne B. R.

Board Member

Rating: 5

When my mother told me her doctor had prescribed her diethylstilbestrol (DES) to prevent a miscarriage while pregnant with me I was stunned and wanted to learn more. Finding DES Action USA was such a relief because it provides accurate information about DES exposure. It also helps me know that I'm not alone. Millions of Americans have been harmed by DES but you can't look at someone and see the damage. It's primarily in our reproductive systems leading to a specific type of vaginal/cervical cancer, infertility and breast cancer among other issues. Learning about DES explained a lot about what has happened to me through the years. Now researchers are looking into the possibility that so-called DES Grandchildren may have health problems relating to this drug prescribed to their grandmothers! I trust the information provided by DES Action, which pushes for continued DES research and informs those of us who should know about special health screenings to protect our health. Where else would I turn for information if DES Action didn't exist? I was so pleased with this small organization that I got involved!