WBCPC and our global impact: what the Coalition has built

On Public Day of the World Bladder Cancer Patient Forum 2026 in Hong Kong, Alex Filicevas, Executive Director of the World Bladder Cancer Patient Coalition, presented WBCPC and our global impact, a tour of what the Coalition and its members have achieved and what comes next.

He began with the community itself. The Coalition now brings together 17 member organisations across 14 countries, and is still growing, with a wider circle of advocates, clinicians and partners extending that reach well beyond formal membership.

Building the community

Much of the Coalition’s work is about making sure members are not working alone. Alex highlighted:

• Members Connect, launched last year at members’ request. Every two months, a different organisation leads a session, shaping the agenda around what they want to share, where they need feedback, or the difficult questions they are facing.
• An online platform for advocates, so the connections made at the Forum and in training do not fade between events. Members share work, continue conversations and catch up on recaps.
• Organisational development workshops, stepping outside bladder cancer to strengthen the organisations themselves. Topics have included communications, event organising, Health Technology Assessment (HTA) and social media, with volunteer management coming next. All are requested by members, and several come with guides members can keep using.
• Practical guides and case studies, drawn from the community and freely available to anyone, not only members. Three were published this year, on fundraising, building online communities, and working with healthcare professionals.

Information patients can actually use

The Coalition’s patient information resources now run to more than nine titles, developed with the Scientific Advisory Board and with patients themselves, and written in plain language. Two more arrive later this year, covering chemotherapy and mental health and well-being. The range of languages keeps expanding, and Alex was clear that members can request any resource in any language, with the Coalition supporting translation.

Alongside these sits BCLEAR, the co-funded European project launched last year. It goes beyond awareness of early signs to tackle health literacy and, above all, shared decision-making: helping patients take an active part in decisions about their care, including knowing what to ask. What makes it unusual is that it works from both sides at once, with the European Association of Urology and professional societies developing parallel support for healthcare professionals. The project runs pilots in three countries and has been designed so the model can be replicated quickly in lower-resource settings once it ends.

Awareness at scale

Alex returned to Bladder Cancer Awareness Month (BCAM), which this year closed a three-year campaign that reached over 41 million people in more than 60 countries, with resources in 31 languages. Work on the next campaign begins now, shaped with members.

The BCAM Grant Programme has now run for five years. In 2026 it became a multi-year programme, with awardees supported over three years rather than one. Alex pointed to Charles Muya and KENCO in Kenya, whose campaign featured earlier in the day, as exactly what the change is designed to enable: building a bladder cancer focus in places where none existed, with the time to make it last.

Evidence, research and influence

The Global Patient and Carer Survey continues to underpin everything, guiding what the Coalition prioritises. Its findings have been presented at congresses worldwide and won best poster awards. One result Alex returned to: 74% of patients were not signposted to a patient organisation, including patients in countries where one clearly exists. A new survey is now in development, and Forum delegates were invited to add their ideas to a board in the room.

Other work he highlighted included:

• The Women Unseen report, published late last year, on the impact of bladder cancer on women and the action needed to close the gap.
• A burden of disease survey published with the International Bladder Cancer Group, comparing how patients and urologists view the mental and emotional impact of bladder cancer, and where those views diverge.
• Six contributions at EAU 2026, across Patient Day, advocates classes and industry symposia, alongside collaborations on shared decision-making and a session at the World Cancer Congress.
• A course developed with Medscape on the patient care experience, and a new collaboration with EORTC on patient-reported outcome measures.

The science behind the advocacy

Last year the Coalition established its first Scientific Advisory Board, chaired by Prof. Ashish Kamat, with members including Prof. Jeremy Teoh and Dr Makarand Khochikar, both of whom presented earlier at the Forum. The Board guides the Coalition’s scientific work and will be central to the patient resources developed after the Forum.

Alex closed on partnerships, showing a list of collaborating organisations that has grown year on year. It was, he said, a good reminder of how much can be achieved when people work together on a common cause.

Join us. If your organisation works with people affected by bladder cancer, explore our global network and find out how to become a member. All our guides and patient resources are freely available to everyone.