Starting a bladder cancer patient group from scratch

The session, Starting a Bladder Cancer Patient Group from Scratch, at the World Bladder Cancer Patient Forum 2024 brought together Laurent Gemenick, Co-founder of CANVES (Spain), and Dr. Stephanie Demkiw, Co-founder of Bladder Cancer Awareness Australia (Australia). Both speakers shared their own personal journeys starting a patient group and outlined the essential steps to consider when starting bladder cancer organisations in their countries.

Laurent Gemenick began by reflecting on the journey of founding CANVES, a patient support group in Spain. He pointed out the urgent need for better patient resources, given that Spain recorded over 23,000 new cases of bladder cancer in 2023 alone. He highlighted the importance of building a clear identity and mission for CANVES. He also shared tips on deciding whether to operate locally or nationally, ensuring the organisation’s goals aligned with patient needs.

“It’s not just about raising awareness – it’s about providing real support and advocacy that truly help patients affected by bladder cancer.” – Laurent Gemenick, Co-Founder of CANVES.

Dr. Stephanie Demkiw followed with her personal experience as a carer for her father who was diagnosed with bladder cancer, and as a General Practitioner (GP) who co-founded Bladder Cancer Awareness Australia. She stressed the importance of understanding the bladder cancer landscape in Australia before starting a group.

She emphasised the value of collaboration with survivors, carers, healthcare professionals, and other not-for-profit organisations to amplify advocacy efforts. She also provided insights into legal steps, sustainable funding strategies, and ongoing leadership development, emphasising that creating a patient group requires patience, persistence, and a shared vision.

Both Laurent and Stephanie ended in agreement that patient advocacy can make a real difference. They emphasised that even the smallest actions can lead to meaningful change and inspire more efforts to support the bladder cancer patient community.

Watch the full session, Starting a Bladder Cancer Patient Group from Scratch, on the WBCPC YouTube Channel.