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 volunteer at Associazione PaLiNuRo.

Both speakers shared how their experiences and personal journeys inspired them to advocate for support, awareness, and meaningful change for people affected by bladder cancer.

Anita’s message focused on the importance of clinical trials and the role of patient organisations in increasing awareness and access. She highlighted that the number of clinical trials in Norway has been decreasing, and that access often depends on geography and patients’ own resources and knowledge. For many, it can take more than 500 days from a drug being authorised to it becoming available in hospitals, making clinical trials an important opportunity for patients.

Anita emphasised that patient organisations have a unique ability to spread knowledge, motivate participation, and foster dialogue, as they speak the same language as the communities they support. She also underlined the value of patient involvement in research, not only in clinical studies but also in early-stage scientific work, to help bring patient needs and perspectives to the forefront.

She concluded by stressing the strong synergy between patient organisations and research communities, noting that collaboration is essential as “we have the same goal, and these are the people on whom our lives depend.”

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.