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Logo of D.E.S is it, DES Action group in France (Diethylstilbestrol)

Our Organization

D.E.S is it is a french non-profit Organization, founded in november, 2019 by Salomé and Déborah Maitrejean, two DES Granddaughters.


Our focus

Our association D.E.S. is it pursues several objectives:

  • Supporting, informing and raising awareness of the consequences of exposure to diethylstilbestrol (DES).
  • The creation of a solidarity network — collaborations, meeting and/or support have already been established with the French association Descendance Distilbène, the American associations DES Info and DES Action, as well as with Scott Kerlin, Ph.D., founder of the DES Sons International Network, and activist Caitlin McCarthy.
  • We'd also like to set up a cohort and cooperate with scientific research, to participate in studies on the transgenerational effects of DES, with a human focus.
  • More concretely, we want patients exposed to DES to be able to benefit from a National Diagnostic and Care Protocol (PNDS) for Diethylstilbestrol Syndrome — on which we are currently making progress — while trying to find experts willing to take part in its drafting. At present, all patients affected by diethylstilbestrol (DES) exposure are in medical limbo. There are patients on the one hand, and a syndrome on the other, and as there is currently no associated Reference Centre, no one can be assigned this rare disease. In our view, patients need this form of recognition, a syndrome covering all their pathologies, for better understanding and management by their doctor(s).
  • For this PNDS to see the light of day, we need to be included in one or more Reference centres.
  • Finally, we would like to know the prevalence of the syndrome, which is unknown. To do this, we need to set up a patient registry.

For who?

D.E.S is it is for all people directly or indirectly exposed to diethylstilbestrol (DES), their families, their relatives and their healthcare providers.

Our vision

We envision a World where meaningful access to information about the dangerousness of drug medications that we consume, such as DES, will warn and save humanity from other health crisis.


Our mission

We aspire to advance knowledge of DES and its consequences:

  • gathering of data, information and facts through polls, surveys or studies;
  • providing a reliable and objective scientific base, and making it accessible through a work of popularization;
  • making proposals on the possible uses of existing and future scientific publications;
  • cooperating with Scientific research and other groups.

We want to submit proposals about:

  • the development of a National Diagnostic and Care Protocols (PNDS) for diethylstilbestrol syndrome;
  • medical care for DES victims.

D.E.S is it Mission is to face the big challenge of the recognition of this major health crisis.

To learn more about our mission statements, please download our Bylaws.

Our french group is for all generations of DES victims: Mothers, Daughters, Sons, Grandson, Granddaughter...

Our values

How we pursue our mission is as important as the mission itself, thus our Organization has cores values which shape the way we work. Our values ​​are the foundation of both our strategic decisions and our operational approach: we aim to do great things. D.E.S is it hopes to contribute to build a better world.

In order to be understood by the greatest number, we communicate in both English and French.

We act with integrity to strengthen right to information and and truth about DES and demand real health democracy.

We conduct ourselves with transparency and authenticity in all the aspects of our work and our Organization.

We provide fair services to all generations of DES victims: Mothers, Daughters, Sons, Grandson, Granddaughter...

We place particular emphasis on welcoming and including members who have been forgotten or left ignored until then: the third generation. We strive to highlight many voices and to reflect the reality and the diversity of the health effects prompted by direct or indirect DES exposure.

We propose an original work integrating Mind, Hand and Heart.

We welcome thoughtful risk taking and consider successes and failures as essential to advocating for the DES cause.

Our purpose is to alert about DES problems and take on the great challenge of claiming and obtaining: recognition and healthcare.

Logo of D.E.S is it, DES Action group in France (Diethylstilbestrol) tEAM