World Bladder Cancer Patient Forum 2024 – bringing bladder cancer advocacy to the Forefront

The World Bladder Cancer Patient Forum 2024 took place in Punta Cana, Dominican Republic, starting with an engaging first day on October 1st. This year’s Forum brought together bladder cancer patient advocates, healthcare professionals, and experts from many different countries to discuss key topics and exchange knowledge.

Focusing on patient advocacy, healthcare collaboration, and the latest research, the Forum’s first day facilitated important conversations aimed at strengthening support people affected by bladder cancer around the world.

Bladder Cancer in Latin America: A rising challenge

The day began with a keynote presentation by Dr. Mario Fernández, Associate Professor Clínica Alemana de Santiago, Universidad del Desarrollo (Chile), discussing the increasing burden of bladder cancer in Latin America. The region is expected to experience a rise in bladder cancer cases, signaling a pressing need for better support systems and advocacy efforts to address the growing challenge.

Patient advocacy in Latin America: Progress and challenges

Fiorella Gagliardi, President of VICARE (Argentina), and Marie Magenhann Cueto, Community Engagement Coordinator at the WBCPC (Belgium), joined for a fireside chat on patient advocacy landscape in Latin America. They discussed both the progress made and the ongoing challenges faced by advocates, including resource limitations and raising awareness about bladder cancer.

Starting patient groups from scratch

Laurent Gemenick, co-founder of CANVES (Spain) and Dr. Stephanie Demkiw, co-founder of Bladder Cancer Awareness Australia (Australia) shared their experiences in founding bladder cancer patient groups in their respective countries. Their presentations showed that building support networks from scratch is possible, and organisations like the WBCPC provide essential resources to help patient advocates on this journey.

Looking Back, planning ahead: WBCPC at 5 Years

Dr. Lydia Makaroff, President of the WBCPC and Chief Executive, Fight Bladder Cancer (UK) , and Alex Filicevas, Executive Director of the WBCPC (Belgium), led a fireside chat reflecting on the achievements of the organisation over the past five years. They highlighted key milestones in global bladder cancer advocacy and outlined future goals, emphasising the importance of continuing to support and grow the bladder cancer patient community worldwide.

Collaborating to support bladder cancer patients

A panel discussion featuring Dr. Martin Angel, Clinical Oncologist, Instituto Alexander Fleming (Argentina), Melanie Costin, Director of Patient Engagement & Support, Fight Bladder Cancer (UK), and Angela Pelletier, Bladder cancer patient and Volunteer, Bladder Cancer Canada (Canada) and Dr. Mario Fernández, emphasised the importance of collaboration between healthcare professionals and patient advocates. The session explored ways to develop patient information resources and ensure that patients receive the necessary support throughout their care.

Incorporating the patient voice in health technology assessment

The role of the patient voice in Health Technology Assessment (HTA) was a central topic in the afternoon sessions. Speakers Lauren Pretorius, CEO, Campaigning for Cancer (South Africa), Lori Cirefice, President, Cancer Vessie France, (France), and Michelle Colero, Executive Director Bladder Cancer Canada (Canada)offered insights into how patient involvement in HTA can influence healthcare decisions, contributing to more patient-centered care.

Research and innovation in bladder cancer

Prof. Joan Palou, Chairman of the Department of Urology, Fundació Puigvert (Spain) delivered a keynote presentation on the latest research developments in bladder cancer, highlighting innovations in the treatment of non-muscle-invasive and muscle-invasive bladder cancer. These advances aim to improve both patient outcomes and quality of life.

Evolving opportunities in clinical trials

The day concluded with a panel discussion on the evolving challenges and opportunities in clinical trials. Dr. Lydia Makaroff, Prof. Joan Palou, Michelle Hull, Global Head of Patient Advocacy and Access, Johnson & Johnson (USA), and Michelle Colero, explored how clinical trials are adapting to become more inclusive and effective. They emphasised the important role patient advocates play in ensuring that trials address real-world patient needs.

The World Bladder Cancer Patient Forum 2024 once again connected our friends and colleagues. It allowed for the sharing of best practice in our community, exchanging patient experiences and challenges while exploring opportunities for improvement together and fostering our close-knit community of bladder cancer patient advocates.

Check the WBCPC YouTube Channel for the recording of the event coming soon. The event report will follow, which aims to capture the essence of the Forum discussions. Stay tuned!