Patient stories that drive change

The World Bladder Cancer Patient Forum 2025 continued on Public Day in Brussels with a moving session titled “Patient stories that drive change.” The session featured two powerful personal testimonies from Anita Eik Roald, bladder cancer patient and CEO of the Norwegian Bladder Cancer Society, and Alessandro Boni, bladder cancer survivor and Board Member of the World Bladder Cancer Patient Coalition.

Both speakers shared how their experiences with delayed diagnosis and treatment inspired them to advocate for awareness, support, and change within their communities.

Anita spoke about her journey in Norway, describing how her first symptom, blood in the urine, was overlooked for months. “I thought it was stress or something normal for my age,” she recalled. By the time she was correctly diagnosed, her cancer had advanced. After treatment and recovery, Anita joined the Norwegian Bladder Cancer Society, where she now leads peer support programmes and awareness campaigns. She emphasised the need for public education, saying, “If my story helps one person see a doctor earlier, it’s worth sharing.”

Alessandro followed with his story from Italy, reflecting on the lessons learned through his diagnosis and his work with Associazione PaLiNuRo. He outlined seven key lessons for patient advocacy: the importance of patient associations, seeking second opinions, access to accurate medical information, better communication with healthcare professionals, financial and psychological support, and recognising caregivers as part of the care team.

Through PaLiNuRo, Alessandro and his colleagues have created practical resources for patients, such as Uro-H Advisor, an online platform that helps patients find specialised hospitals and urologists across Italy. They are also advocating for national recognition of caregivers and for free psychological support for bladder cancer patients.

The session concluded with a shared message: patient voices are powerful tools for change. By turning lived experience into action, Anita and Alessandro are helping build a future where no one faces bladder cancer alone.