About Us

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


DES Action USA is the only national organization for all individuals exposed to DES, their families and health care providers. DES Action USA has been serving the DES-exposed community since 1978. In 2015, the board of directors voted to donate the organization to MedShadow Foundation, which it determined to be the right home where DES Action could continue to thrive.

DES Lilly Bottles Many Types

DES Action USA proudly accepts no funding from the pharmaceutical industry!


We offer information and resources geared toward keeping DES-exposed Mothers, Daughters, Sons, and Grandchildren informed on DES research and health screening guidelines.


DES Action USA is pleased to have achieved the status of a Great Nonprofit. You can read what people are saying about our organization.

Benefits Include:

Searchable Doctor Listings

DES aware doctors in your area. You can search by city, state or ZIP code. You’ll find doctors’ names, practice names, specialties and contact information. These doctors have been recommended by DES Action members.

Monthly eMail Alert

News and updates every month in your eMail box.

Quarterly VOICE Newsletter


Current and historical. . Access all 39 years of newsletters. The VOICE documents the history, the science, the new research, and the personal stories of DES.

Attorney List

A list of knowledgeable attorneys DES Action members have shared.


GRYT (formerly known as Stupid Cancer App)

Offers online opportunity to seek support or provide mentorship to other DES exposed, with or without a cancer diagnosis. Allows you to choose who you communicate with. Currently available for IPhone, and Android app.

*New! Library of Facebook Live Events

During our 40th anniversary year, and going forward, go to our DES Facebook page to “attend” talks by authors, researchers, and advocates of interest to the DES community. Ask questions, get answers live! Can’t attend…no problem, view the videos available to all on DES Action website after the event!

DES Action USA on Facebook*

“Like” DES Action USA on Facebook and follow us on Twitter to stay up to date on medical and environmental health news that affects you, your loved ones and the planet. There’s a ton of information online 24/7 that affects the DES population

– we moderate the page so information is accurate! Be part of the conversation!

Online Support Group for DES Daughters

A safe private community of DES Daughters where you can compare notes, share doctors’ advice, and resources, and gain knowledge on issues that affect DES Daughters during different phases of life via our email listserve.

Online Support Group for DES Men-Sons and Grandsons

A safe private community of DES sons and grandsons where you can compare notes, share doctor’s advice, and resources, and gain knowledge on issues that affect DES exposed men during different phases of life via our email listserve

Toll free number — (800) 337-9288

Advocate for Continued DES Research

You can’t do it by yourself – but together we can. Without DES Action’s push for research and advocacy for continued funding, it would not have happened.

DES Action stays in touch with scientists about their DES studies and keeps them aware of health issues being experienced by those of us who were exposed to DES.



DES Information For All:

  • General information about DES health consequences, DES cohort follow-up studies, published journal articles, and recommended screenings
  • Updated Gynecologist Guide 2019
  • Directions for doctors on how to do a proper DES Daughter Pap/pelvic exam

What we are not able to provide:

  • Financial assistance in paying for health care or insurance
  • Medical diagnosis/licensed medical advice or professional legal advice. We are not doctors or attorneys


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