Patient Resources and Communities

Why don't we offer our own forum?

Many patients ask us for a space to exchange with one another. We have chosen not to host our own forum: health data shared between patients is subject to strict GDPR requirements (consent, ongoing moderation, right to erasure), and unmoderated exchanges between patients carry a real risk of incorrect medical advice or delayed care.

Instead, we have compiled a list of existing, reputable and already active external resources you can turn to in order to exchange with other patients — bearing in mind that an individual account never replaces personalised medical advice.

Uterine fibroids

mon-fibrome.fr — Shared decision-making tool, developed with the Île-de-France Regional Health Agency (ARS) and the Fibrome Info France association Fibrome Info France — Patient association, of which our department is a partner for the French Fibroid Congress Carenity — Women's health — Active patient community, accounts and exchanges (fibroids, adenomyosis)

Endometriosis

Carenity — Endometriosis — Large patient community, accounts of diagnosis and treatment Carenity — Adenomyosis — Specific exchanges on adenomyosis, often associated with endometriosis

Prostate (benign enlargement and cancer)

Carenity — Benign prostatic hyperplasia — Patient accounts, including on prostate embolization Carenity — Prostate cancer — Exchanges on day-to-day experience and treatment after-effects

Liver, kidney and lung cancers

La Ligue contre le cancer (French League Against Cancer) is the national reference association, with forums moderated by medical staff (Dr A. Marceau).

Ligue contre le cancer — Liver cancer (HCC) — General forum, moderated by a physician, including rarer liver cancers Ligue contre le cancer — Urological cancers (kidney and bladder) — Dedicated forum, moderated by a physician Ligue contre le cancer — Lung cancer — Dedicated forum, moderated by a physician AFEF — French Association for the Study of the Liver — Reference medical information on hepatocellular carcinoma (not a forum, but a reliable source)

⚠️ These resources are external to and independent of Cochin Hospital AP-HP — we cannot guarantee the medical accuracy of each individual account shared on them. Experiences can vary considerably from one patient to another; only personalised medical advice can assess your own situation. If in doubt, contact us directly.

Why this page is trustworthy

Written by the Interventional Radiology team at Cochin Hospital AP-HP, Université Paris Cité. Links verified and updated in August 2026. Last updated: August 2026.

🏥 The Department 📰 News 🇫🇷 🔬 Research & clinical trials 🇫🇷