Patients’ associations
ENDOMind : French Association of Actions Against Endometriosis
ENDOmind France is involved, together with the other players in this disease, in raising the awareness of the general public and participe, and in the development of links between the associations, the health care professionals and the female patients.
Our objective is to provide better information on the disease, shorten the diagnostic time and foster the development of research by making endometriosis a true challenge for society and public health.
Today, ENDOmind and the group “L’Avancée” work together to implement therapeutic education and support group to provide the female patients with the tools necessary to deal with the pathology.
ENDOFRANCE : French Association Against Endometriosis
Endo-France, a French association against endometriosis created in France in 2001, is the first association leading the fight against endometriosis. It was also the first association approved by the Ministry of Health in September 2018. The association provides support to women suffering from endometriosis and their families and friends.
Owing to the support of its Scientific Committee composed of world-renknown experts, the association organizes conferences and round tables for the general public to provide information on endometriosis. Since 2005 EndoFrance lobbies the public authorities to obtain the recognition of this pathology. The association drafted the chapter on the HAS/CNGOF recommendations for the management of endometriosis concerning the information to be provided to the female patients; moreover EndoFrance published a book about the “conventional wisdom on endometriosis” with the support of experts on the disease.
Les Clés de Vénus
Clés de Vénus is an association of female patients whose mission is to provide information on sexual pains and thus to help women who are afflicted.
Vaginism is an unwanted contraction of the vagina that prevents penetration. Dyspareunia is a term that designates all the pains experienced during or after sexual intercourse.
Is penetration impossible or very painful during sexual intercourse? Do not be ashamed of such pains: you are not abnormal, simply you experience pain for reasons that remain to be identified, but which exist, and which can be overcome.
Do not feel guilty: this pain is no fault of yours. On the contrary, you are the victim of a sexual disease or disorder which you are not doomed to experience for the rest of your life!
Vaginism and vulvodynia are not inevitable. The “Les Clés de Vénus” association aims to combat the taboo around these disorders and to help women and their partners to overcome these sexual diseases and disorders until they are forgotten.
Association for Information on Pudendal Neuralgia and Pelvi-Perineal Pains (AINP)
The AINP is an association recognized by the Ministry of Health. It serves the following main missions:
- To inform and obtain recognition of this heavy and debilitating pathology.
- To inform, orientate, advise and support the patients and their families.
- To raise the awareness of the general public to gain respect for the disabled persons, and to fight against all forms of discrimination connected with this pathology.
French Association of Interstitial Cystitis (AFCI)
Interstitial cystitis (IC) which should not be confused with the conventional bacterial cystitis is a rare and highly debilitating urological disease. IC is a chronical disease that affect up to 90% of women. It causes severe pains as well as frequent and urgent urinations at all hours of the day. The resutling loss of autonomy may reach such a level that patients do not dare leave their homes, hence causing a major impact on their lives (professional, social, family, etc.).
The French Association of Interstitial Cystitis, founded January 10, 2004 (published in the official journal on 21 February and 13 March 2004), aims to help IC patients.
The purpose of this site is to provide information to patients affected by this pathology and to the health care professionals, and to foster contacts and mutual support.
The information provided is intended to improve, but not replace, the direct relationship between the patient (or the individual visiting the site) and the health practitioners.