Organizations & Associations

Organisaties & Verenigingen

Below you'll find a number of organizations dedicated to invisible hormonal illnesses, recognition, research, and support. You can use them to find information, connect with others in the same situation, or to support yourself.

Netherlands & Belgium & Luxembourg

  • Endometriosis Foundation (NL)
    The national patient organization that works to increase awareness, recognition, and improve care for everyone with endometriosis and adenomyosis. They work to increase knowledge, awareness, support peer support, and stimulate research. endometriose.nl +2 endometriose.nl +2

  • PCOS Netherlands Foundation
    They are committed to raising awareness of PCOS, building a better bridge between doctors and patients, and raising awareness of the impact of PCOS. They offer information, peer support, and personal stories. stichtingpcosnederland.nl +1

  • Behind Endo Stories (BE)
    A Flemish patient association that works for the recognition of endometriosis and adenomyosis, with a focus on information, stories, and community. Behind Endo

  • EndoLux / Endometriosis Luxembourg (EndoMarch team)
    Linked to the worldwide EndoMarch, with a Luxembourg-based group dedicated to awareness and advocacy, they organize actions, events, and an online community. Worldwide EndoMarch +1

Germany & Austria & Switzerland

  • Endometriosis-Vereinigung Deutschland eV

One of the oldest endometriosis patient organizations in the world; offers information, self-help groups, advice, and lobbies for better care and recognition. endometriose-vereinigung.de +2 endometriose-vereinigung.de +2

  • Scientific Endometriosis Foundation (SEF) (DE)

Focuses on research, knowledge sharing and training of healthcare professionals around endometriosis.

  • Endometriosis Association Austria (EVA)

Patient association that offers information, events, and support for people with endometriosis in Austria. eva-info.at +1

  • S-Endo – Association Suisse de l'Endométriose (CH)

Swiss organization with information, events, and support for people with endometriosis. s-endo.ch

  • Swiss Endometriosis Association / Endo-Help & self-help groups

Central self-help organization for Switzerland, plus local groups (e.g., Zurich) that are shared through a central overview. Stiftung Endometriose Forschung

France, Spain, Portugal, Italy

  • EndoFrance

First French endometriosis association (2001), recognized by the Ministry of Health; focuses on education, support, and policy. Association EndoFrance +1

  • Fondation Endometriose (Endometriosis Foundation France)

Focuses on research, multidisciplinary projects, and collaboration between patients, physicians, and researchers in France. fondation-endometriose.org

  • ADAEC – Association for Endometriosis Crónica (ES)

National Association for Women with Chronic Endometriosis, active in awareness, information, and advocacy. adaec.es

  • EndoMadrid

Regional organization in Madrid for people with endometriosis, adenomyosis, PCOS and related conditions, focusing on rights, care and specialized units.
EndoMadrid +1

  • MulherEndo – Associação Portuguesa de Apoio a Mulheres com Endometriosis (PT)

Patient organization that offers support, rehabilitation, and physical/mental support to women with endometriosis and adenomyosis; very active in the media and policy (including drug reimbursement).
healthnews.pt+3 mulherendo.pt+3 mulherendo.pt+3

  • Italian Endometriosis Foundation / Fondazione Italiana Endometriosis (IT)

Non-profit foundation that supports women, disseminates information and funds research into endometriosis.
Endometriosi.it +1

Scandinavia ​

  • Endometriosföreningen Sverige (SE)

National patient association since 1989; offers support, information, and works towards better care and guidelines.
endometriosforeningen.com+2fass.se+2

  • Endometriosis Foreningen / Endometriosis Fællesskabet (D

Danish patient association and community with information about endometriosis and adenomyosis, podcasts, tools for daily living, and advocacy.
endo.dk+2findingendometriosis.eu+2

  • Endometriosis screenings (NO)

A national association whose board consists of people with endometriosis/adenomyosis or their loved ones; it offers information, advocacy, and peer support.
Endometriosis screenings+1

  • orento ry (formerly Endometrioosiyhdistys ry) (FI)

Gynecological patient organization dedicated to people with endometriosis, adenomyosis, PCOS, and vulvodynia; offering information, peer support, chats, groups, and apps.
Endometriozis ve Adenomyozis Derneği +3 Korento ry +3 Korento ry +3

United Kingdom

United States

  • Endometriosis Association
    One of the world's first endometriosis organizations; an international self-help organization of women with endometriosis, their families, doctors, and researchers, focused on support, education, and research. Endometriosis Association +1

  • Endometriosis Foundation of America (EndoFound)
    American non-profit organization focused on awareness, education, advocacy, surgical training, and research; known for campaigns, school programs, and conferences. Endometriosis: Causes - Symptoms - Treatment +2 Wikipedia +2

  • PCOS Challenge: The National PCOS Association
    The world's largest nonprofit for PCOS support and advocacy; works with Congress and health agencies on policy, research, and awareness. pcoschallenge.org +2 pcoschallenge.com +2

  • PCOS Awareness Association (PCOSAA)
    Nonprofit focused on global awareness and education about PCOS, with plenty of accessible information and support. PCOS Awareness Association