Understanding Progestin-Related Meningiomas AndrocurLuteranLutenylColproneOvergestoneDEPO-PROVERAAntigone
Who are we ?
Amavea is an association that informs and defends patients with meningiomas because of drugs Androcur, Lotéran and Lotényl, Colprone, Surgestone, Depo-Provera, Antigone, Optimizette, Cérazette, Elfasette and Déogestrel
En 2026, l’association a 7 ans d’existence. Elle a été créée en janvier 2019 par Emmanuelle HUET-MIGNATON avec l’aide de Nathalie GRILLOT, toutes deux concernées par les médicaments progestatifs qui leur a induits des méningiomes.
À ce jour, l’association compte plus de 1000 adhérent(e)s ! Le combat de l’association est multiple :
- that women who consume medications shown to increase the risk of meningiomas be informed of the risk.
- that prescribing doctors are also informed, and that they give their patients accurate information about what meningiomas are (certainly "benign" tumors, but which can cause serious neurological problems, depending on their location, such as loss of mobility, epilepsy, loss of smell, hearing, etc.).
- AMAVEA a reçu l’agrément du Ministère de la Santé en juillet 2020 (renouvelé en juillet 2025)
Nous sommes des milliers de femmes atteintes de méningiomes à cause de médicaments progestatifs, et des millions de femmes qui se voient encore prescrire ces progestatifs ! Pour les progesattifs démontrés à risque, les prescriptions sont maintenant encadrées (et ça a été un combat gagné par l’association), mais reste tous les progestatifs non encore étudiés, qui sont aussi potentiellement à risque.
AMAVEA's strength lies in being, since 2019, the preferred interlocutor with the ANSM and EPI-PHARE to request the necessary studies.
A savoir : tous les méningiomes ne sont pas dus à un médicament progestatif. On estime à entre 10 et 20% des méningiomes ceux qui résultent d’un traitement progestatif.
AMAVEA se bat pour pour une information juste donnée aux patientes qui consomment des médicaments progestatifs.
QUESTIONNAIRE QUALITÉ DE VIE
En 2026, questionnaire qualité de vie : Vous qui découvrez l’association et qui avez un méningiome, l’association, avec l’aide du Pr Johan PALLUD, chef de service de neurochirurgie au GHU PARIS, a créé un questionnaire sur la qualité de vie. Pour en savoir plus, voir l’article : https://amavea.org/questionnaire-qualite-de-vie-de-personnes-ayant-des-meningiomes/
On compte sur vous pour y répondre via ce lien : https://ecrf.ghu-paris.fr/surveys/?s=NH9HL3FX7FYYX3YK
We answer you
Want to explore the brain?
The brain is the most complex organ in the human body. It controls your movements, sensations, emotions, and memories. Each area has a specific role: seeing, hearing, speaking, moving, thinking, etc. Explore its different parts and discover, in just a few clicks, the behind-the-scenes work of this conductor of life.
Meninges
The meninges are membranes that envelop and protect the central nervous system: brain and spinal cord.
Cerebellum
This area at the back of the brain gathers data from perceptual areas to guide fine motor functions.
Temporal Lobes
It is the “sound and memory translator”: it manages hearing, language understanding and stores memories.
Occipital lobe
C’est le « projecteur visuel » : il traite tout ce que les yeux voient.
Sans lui, pas d’images mentales.
Parietal lobes
It is the “sensory GPS”: it receives information from touch, pain, temperature, and helps us find our way in space.
Frontal Lobes
It is the “conductor”: it manages planning, decision-making, concentration, emotions and also voluntary movements.
We answer you
What is a meningioma?
Le méningiome est souvent désigné comme une tumeur « bénigne ». Ce terme scientifique cache une maladie qui n’a rien de bénin. Ces tumeurs sont complexes à soigner, demandent parfois des opérations chirurgicales délicates et de longues convalescences. Cette maladie peut bouleverser la vie des personnes touchées.
Vous êtes concerné par un méningiome ? Nous pouvons vous accompagner.
Our latest news
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PORTRAIT DE BENEVOLE- Catherine- bénévole au GHU PARIS
Lire la suite
: PORTRAIT DE BENEVOLE- Catherine- bénévole au GHU PARIS
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"THEY'RE RUINING OUR HEALTH." Radio-France Special Edition, La Revue Dessinée
Lire la suite : « ILS NOUS RUINENT LA SANTE ». Hors série Radio-France La Revue Dessinée
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VOLUNTEER PROFILE: Stéphanie - volunteer with the support group L'écho des maux (The Echo of Pain)
Lire la suite : PORTRAIT DE BENEVOLE Stéphanie- bénévole du groupe de paroles L’écho des maux
Progestins and risk of meningiomas
Medicines concerned
To date 7 drugs have been demonstrated at risk of meningiomas:
- Androcur (cyproterone acetate),
- Lutéran (Chlormadinone acetate),
- Lutényl (nomegestrol acetate),
- Colprone (Medrogestone),
- Surgestone (Promegestone),
- DEPO-PROVERA (MédroxyProgesterone acetate),
- Antigone, Optimizette, Cerazette, Elfasette and Désogestrel 75µg
The list is not exhaustive, there are potentially others, studies are underway.
How to detect meningioma?
Si vous avez des symptômes évocateurs de la présence d’un méningiome, un dépistage peut être nécessaire et vous devez demander à votre médecin prescripteur de vous fournir une ordonnance pour passer une IRM cérébrale avec injection de produit de contraste (recommandations récentes sur l’indication d’ une IRM cérébrale pour rechercher un méningiome).
Le GHU PARIS vous permet d’avoir un dépistage rapide, si vous avez pris un des dérivés de la progestérone.
Vous pouvez bénéficier de ce dépistage en écrivant à ce seul mail (en ayant une ordonnance pour une IRM cérébrale de votre médecin) : depistage@ghu-paris.fr
Our actions to support you
Partnership with hospitals
The association has signed a partnership with GHU Paris, so that volunteers can visit patients and close to the neurosurgery department. The volunteers trained and invested are more and more numerous each year: Magali, Anne, Mireille, Cécile, Eric, Catherine, Carole, Karin, Sophia, Patricia.
Legal support & facilitation of the medical journey
One of the objectives of the AMAVEA association is to support the victims who have developed meningiomas following the taking of hormonal treatments such as Androcur, Luteran, Lotényl and other progestins, in their legal procedures to request compensation.
Offer a speech
Thanks to a private discussion group on Facebook, we can unite the victims, support them, allow people to make links, in their medical history, with symptoms, to support them, when they discover “reality” of this injustice by MRI.
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Sophie 38 years old, Melodia contraceptive pill for 14 years, 1 meningioma operated
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We help you see more clearly
Find out thanks to our resources
Booklets and files
Consult our booklets and files dedicated to meningiomas, their treatments, and the forensic procedures to better understand and act.
Discover their content now!
YouTube channel
Find informative videos, patient testimonies and expert advice on meningiomas and progestins.
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Join the fight against
meningiomas!
Each day, thousands of people affected by meningiomas and their loved ones need listening, support and reliable information. By engaging alongside us, you participate in an essential cause: support, inform and defend patients in the face of medical and administrative challenges.
Join us and make the difference!
Since 2019, Amavea is :
+ 1000
Membership
Each year, more and more committed volunteers join our cause, providing support and comfort to patients. Thank you to all our precious volunteers for their dedication!
20
volunteers
To answer your questions, via the mailboxes of delegates, to support you when you are hospitalized, at GHU Paris or at the Brest CHU
7
years of existence
7 years of work with the ANSM (National Agency for Medicines and Health Products Safety), hundreds of thousands of patients concerned who have been informed and helped.
