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

Some of our actions

1855 days after the creation of the association

  • Apr 21, 2024

    Diethylstilbestrol syndrome (DES) Awareness clip

    Diethylstilbestrol (DES) Awareness Week was launched for the very first time in the USA in 1985 by President Ronald Reagan. Since then, it has been held every last week of April. This year, DES Awareness Week runs from April 21 to 27, 2024.
    Today, our aim is to raise awareness of a rare disease directly caused by exposure to diethylstilbestrol: diethylstilbestrol syndrome or DES syndrome. To this end, we have produced a video clip. For more information on this rare disease, visit: www.des-is-it.org/en/diethylstilbestrol-syndrome

  • Aug 2, 2023
    Contact with a member of parliament in our constituency

    Contact with a member of parliament in our constituency

    We have written to Anne Brugnera, Member of Parliament, asking her to support our request to cover the costs of pregnancies of granddaughters and great-granddaughters affected by diethylstilbestrol (DES, Distilbene— French Brand name of DES, Stilbestrol), supported by our petition of over 9,500 signatures (still available online at https://www.change.org/p/minist%C3%A8re-des-solidarit%C3%A9s-et-de-la-sant%C3%A9-et-assurance-maladie-prise-en-charge-sp%C3%A9cifique-des-grossesses-pour-les-petites-filles-distilb%C3%A8ne-des). The latter was sensitive to our approach and wrote a letter to the Minister of Health and Prevention, Aurélien Rousseau.

    Since then, we have been waiting for his reply...

  • Apr 24, 2023

    Video clip for the DES Awareness Week

    DES Awareness Week, which we launched in France, is held every last week of April.
    This is an opportunity for us to raise awareness of the consequences of DES exposure on social networks and through the making of a new video clip in which we show what a "DES family" really is.

  • Mar 22, 2023

    Translation of the historic speech by Scottish First Minister Nicola Sturgeon

    On March 22, 2023, Scottish First Minister Nicola Sturgeon issued a public apology for the forced adoption scandal.

    For many years, in the United Kingdom, women were forced to give up their babies just because they were single. But that's not all: they were then prescribed DES to dry up their breast milk...

    Read our a previous article to find out more.

    We are very happy to have made the French subtitles of the speech so as French speakers can understand this historical speech.

  • Mar 3, 2023
    D.E.S is it was invited to the national days of the NeuroSphinx health network which took place at the Imagine Institute on March 2nd and 3rd 2023

    Meeting with NeuroSphinx Network

    Our association D.E.S is it was invited to the national days of the NeuroSphinx health Network which took place at the Imagine Institute, Paris, on March 2nd and 3rd 2023.

    We were thus able to learn more about the work of the Network, its field of action, as well as that of the various actors who make it up. These days have taught us a lot and have allowed us to make beautiful meetings!

  • Feb 28, 2023
    Rare Disease Day: Diethylstilbestrol syndrome

    Rare Disease Day

    Each year, the association D.E.S is it raises awareness of diethylstilbestrol syndrome on the occasion of International Rare Disease Day.

    Diethylstilbestrol syndrome (DES) is currently defined on Orphanet (the portal for rare diseases) as a malformative syndrome that occurs in the offspring (children and grandchildren) of women exposed to DES during their pregnancy (DES mother).

  • Sep 4, 2022
    Letter of support for the restoration of funding for the DES Follow-up Study - DES is it & Descendance Distilbène French organizations

    Letter of support for the restoration of funding for the DES Follow-up Study

    The DES Follow-Up Study is an American research study that investigates the long-term health effects of diethylstilbestrol (DES) exposure. Through a campaign launched by DES Action USA and activist Caitlin McCarthy we learned that funding for this study has been severely cut.

    That is why, with another French organization and partner Descendance Distilbène, we wrote a letter of support for the restoration of funding for this fundamental study.

  • Apr 25, 2022

    Video clip for the DES Awareness Week

    Currently, not a single day is dedicated in France to the "victims of Distilbène" (DES French brand name). This is why, for the second consecutive year, we are trying to make the "DES Awareness Week" exists in France.

    For this occasion, we have made a video clip. We explain what DES is: an inefficient and dangerous drug prescribed to pregnant women, a synthetic estrogen easy to produce that allowed pharmaceutical companies to make a lot money, a rare disease "DES syndrome" with no expert, an endocrine disruptor which affected gene expression...

    We inform people that they may have been exposed without even knowing it, and invite them to join us.

  • Mar 26, 2022

    Translation of the speech of Caitlin McCarthy, DES daughter, screenwriter of WONDER DRUG, to the Scottish Parliament

    Caitlin McCarthy, screenwriter of WONDER DRUG*, recently addressed the Members of the Scottish Parliament. We made the French subtitles of her Youtube video, so that French speakers can understand and share it, and wrote an article. It is a historic moment for the DES cause. She testifies about her experience as a DES survivor, she relates the Forced Adoption Scandal to which DES exposure was added, advocates for change and carries the hope of all the generations of invisible and forgotten victims.

    We thank Caitlin once again for her moving testimony and her commitment to the DES cause, and, of course, we join her: we are fighting the same battles!

    * Please read the interview we made: No one comes out of this "Wonder Drug" unscathed

  • May 1, 2021
    Niagara Falls Lights up for DES Awareness Week

    Participation in 2021 DES Awareness Week

    DES Awareness Week was launched in 1985 by President Ronald Reagan as the national DES awareness week in the United States.

    D.E.S is it joined this year with our partner, DES Info, to celebrate DES Awareness Week, which was held from April 27 to May 1, 2021.

    On the occasion of this event, many illuminations took place in the United States. The most impressive, and marking the opening of the week, was undoubtedly the one at Niagara Falls. This week has allowed us to share many testimonies of victims.

    This is the first time in France that the DES awareness week is celebrated. Indeed, at this time, not even a day is dedicated in France to the victims of DES.

    From now on, our association D.E.S is it will celebrate it every year.

  • Oct 17, 2020
    Launch of a national census for DES French victims

    Launch of a national census for DES French victims

    D.E.S is it association believes it is in the public interest to know the true numbers of people affected by DES, marketed in France under the brand names Distilbene®, Stilboestrol-Borne® and Furostilboestrol®.

    This is why we have launched a national census of diethylstilbestrol victims, accessible at the following page: census-of-french-diethylstilbestrol-victims.

  • Jan 26, 2020
    Launch of a petition for adapted maternity leave for DES granddaughters

    Launch of a petition for adapted maternity leave for DES granddaughters

    We have launched a petition to ask for an adapted maternity leave for granddaughters who are victims of Distilbene/Stilbestrol-Borne. Indeed, their pregnancies are just as much at risk as DES Daughters

    To learn more, please read our article at : https://www.des-is-it.org/en/news/post/petition-for-an-adapted-maternity-leave-des-granddaughters-face-special-risks-during-pregnancy

  • Jan 1, 2020
    Creation of the website and official pages on social networks

    Creation of the website and official pages on social networks

    We have created a website to be visible to all so that we can inform, exchange on the DES and its consequences, and support those affected.

    We are also active on social networks such as Facebook, Twitter, Linkedin or Pinterest (where you can discover our images).

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