Urological Concerns in Anorectal Malformation and The Importance of Lifelong Care

Two people on stage, presenting at the EAU26

EAU26 (Annual European Association of Urology (EAU) Congress 2026) was a powerful reminder of how bringing together patient advocates and clinicians can advance care for people living with rare uro-recto-genital diseases and complex conditions.

Patient voices at the heart of the session

Dalia Aminoff (leader of the Italian patient organisation for anorectal malformation, AIMAR, and ERN eUROGEN ePAG member) and Kate Tyler (Trustee of Max’s Trust and ERN eUROGEN ePAG member) presented on urological concerns in anorectal malformation (ARM) and the importance of lifelong care.

Their key message was clear: “50% of patients born with anorectal anomalies have a urological problem that may continue throughout the patient’s life. It is essential to have an adult urologist taking care of these patients, particularly for those with complex malformations or prior bladder augmentation or urinary diversion“.

Dalia and Kate at EAU26

Dalia is the mother of a son born with ARM, and Kate was born with ARM.

Standing outside EAU26

Held in March 2026, 16 thousand people attended EAU26, it consisted of 4 full days of intensive scientific programming. It included all conference attendee sessions with new interactive and discussion heavy formats, followed by specialised talks including live surgery demonstrations, case discussions and expert panels alongside Educational courses with numerous hands on training sessions provided by the European School of Urology (ESU). We are proud that one of our trustees - Kate Tyler was among the presenters, voicing a strong message for those born with ARM.