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. All the information on DES Action is free. We proudly accepts no funding from the pharmaceutical industry!
DES Action 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. In 2023 the HHS/National Cancer Institute dropped funding for the ongoing DES Follow-up Study, which was an incredible, multi-generational study of DES-exposed families. It resulted in the majority of information we have today on DES.
With the ending of that flow of information, it was decided by MedShadow Foundation to continue the nonprofit DES Action as an all-volunteer org. The annual membership fee was stopped as was the quarterly newsletter, The VOICE.
We offer at no charge, information and resources for DES-exposed Mothers, Daughters, Sons, and Grandchildren along with 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.
We are a free, all volunteer organization. We do still have about $30,000 in annual expenses (as of 2024) to continue to manage and update the website information along with legal requirement compliance. We welcome donations of any size except from pharmaceutical companies.
Highlights of DES Action website:
![VOICEbanner[1]](https://desaction.org/wp-content/uploads/VOICEbanner1-300x65.gif)
More than 40 years of DES and DES Action history and information. This searchable database is excellent for a deep dive into DES topics. The VOICE documents the history, the science, the new research, and the personal stories of DES. The VOICE stopped production in 2023.
Health Guidance
Here is a searchable list of DES-aware doctors across the USA. Please send us doctors who have given you good care to add to the list.
Many doctors are not aware of the proper care and guidelines for DES Daughters. DES Action created a Gynecologist Guide 2019 for you to print out an share with your gynecologist.
Our website also offers directions for doctors on how to do a proper DES Daughter Pap/pelvic exam
Attorney List
A list of knowledgeable attorneys DES Action members have shared.
Library of Facebook Live Events
During our 40th anniversary year, DES Action interviewed leaders in DES – attorneys, doctors, and activists.
DES Action USA on Facebook
Update 2025: We no longer monitor the DES Action USA page on Facebook or the X / Twitter feed. We would love a volunteer who might want to take this on.
Online Support Group for DES Daughters
A 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. Reach out to Info@DESAction.org to request membership.
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.
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