WBCPC: supporting our member community

On Advocates Day of the World Bladder Cancer Patient Forum 2026 in Hong Kong, Alex Filicevas, Executive Director of the World Bladder Cancer Patient Coalition (WBCPC), and Lori Cirefice, President of WBCPC, sat down for a conversation about what it takes to truly support the Coalition’s members.

Lori opened with her own story. In 2013, when her husband was diagnosed with bladder cancer, they were living in the south of France with no patient organisation to turn to. She found Fight Bladder Cancer in the UK, got involved, and later co-founded Cancer Vessie France in 2017 with the help and borrowed resources of organisations like Fight Bladder Cancer and Bladder Cancer Canada. “We didn’t have any resources when we started out,” she said. “We copied from a lot of you in this room, and we still do today.”

That same spirit, help passed from one member to the next, is what WBCPC’s first Coalition Compass survey set out to measure this year. The results were reassuring on one front: 88% of members said they feel a strong sense of belonging to the Coalition, and none reported dissatisfaction. But on another front, they pointed to work still to do: only 25% said they had actually used something WBCPC produced in their own country. For Lori, that gap was the hardest finding to sit with, a reminder that empowering members means more than producing good resources; it means making sure they get used.

Alex outlined four ways WBCPC is closing that gap: Members Connect, peer-hosted sessions that have run six times since launching last September; the Advocates Hub, where members can catch up on sessions and connect between Forums; fact sheets now available in French, Spanish, Portuguese and Japanese, with more languages on the way to address the 88% of members who cited language as a barrier; and a growing set of workshops on Health Technology Assessment (HTA), advocacy and leadership.

The Bladder Cancer Awareness Month campaign, led entirely by members in their own languages, shows what that support can achieve: it has reached more than 41 million people in over 60 countries. This year’s Bladder Cancer Awareness Month Grants, now in their fifth year, also went to three new advocacy groups, including Kenco in Kenya, helping them take their first steps into the field.

Looking ahead, Alex and Lori invited members to help shape WBCPC’s next Global Patient and Carer Survey, a conversation the Forum continued that afternoon in a dedicated World Café workshop. As Lori put it, the goal is simple: keep listening to what members need, and keep building a Coalition strong enough to act on it.