2025 A New Year, A Shared Vision

The New Year is a great time to start fresh and discover new opportunities to make the upcoming year the best one yet. At the World Bladder Cancer Patient Coalition, we are filled with renewed hope, determination, and a shared commitment to making a meaningful difference in the lives of bladder cancer patients and their families worldwide.

This year, we have some suggested resolutions just for you, aimed at making a positive impact on the community of people affected by bladder cancer.

Kickstart your career: trainee opportunity in global health advocacy

Join a global coalition making a difference for people affected by bladder cancer worldwide. This internship is a full-time remunerated position with flexible working arrangement on a full-time basis with at least one working day in the office, understanding that office time and external meetings in Brussels may be required more often during certain periods.

The organisation is headquartered in Brussels, Belgium.

Who are we?

As a rapidly growing coalition spanning 16 organisations across 14 countries globally,

Key questions to ask your doctor or nurse: New factsheet now available

We are excited to announce the launch of our latest resource, “Key Questions to Ask Your Doctor or Nurse”, part of our growing series of patient factsheets. This factsheet is designed to empower bladder cancer patients and their loved ones by providing some essential questions to discuss with healthcare professionals about diagnosis and prognosis.

This resource is intended to:

  • Support patients in understanding their bladder cancer diagnosis and prognosis
  • Encourage meaningful discussions about treatment options and next steps and serve as a conversation aid for healthcare professionals having conversations with their patients recently diagnosed with bladder cancer.

Strengthening the patient voice in HTA

The session titled “The role of the patient voice in Health Technology Assessment – HTA 101” at the World Bladder Cancer Patient Forum 2024 brought patient experts from our community to explore how this critical process shapes healthcare decision-making. The discussion highlighted the importance of HTA in ensuring that treatments, medical devices, and even public health campaigns deliver value not just in terms of cost but also in their impact on the lives of people affected.

Building effective partnerships with healthcare professionals

At the World Bladder Cancer Patient Forum 2024, a dynamic panel discussion explored the critical role of collaboration between bladder cancer patient organisations and healthcare professionals. Moderated by Dr Stephanie Demkiw, Co-founder of Bladder Cancer Awareness Australia, the session featured insights from Alex Filicevas, WBCPC Executive Director; Lauren Pretorius, CEO of Campaigning for Cancer and Melanie Costin, a bladder cancer patient and advocate from Fight Bladder Cancer and Adam Lynch,

Policy as a tool to advocate for bladder cancer patient needs

At the World Bladder Cancer Patient Forum 2024, Eva María Ruiz de Castilla, Executive Director of The Latin America Patients Academy (LAPA), conducted a practical workshop titled Policy as a Tool to Advocate for Bladder Cancer Patient Needs. In this interactive session, Eva María guided patient advocates through the process of using policy to improve healthcare access and ensure better treatment, care and support for bladder cancer patients.

Uniting to meet bladder cancer patient needs

At the World Bladder Cancer Patient Forum 2024, advocates shared powerful insights on enhancing patient support and tackling the unique challenges of bladder cancer care.

Michelle Colero from Bladder Cancer Canada aopened the discussion by sharing her personal connection to bladder cancer and her journey in the non-profit sector. Her organisation provides vital support groups tailored to the unique needs of caregivers and patients, including those with metastatic or muscle-invasive bladder cancer.

Current success and future ambitions for greater awareness

At the World Bladder Cancer Patient Forum 2024, a fireside chat titled Current Successes and Future Ambitions for Greater Awareness brought together Lori Cirefice, President of Cancer Vessie France; Lauren Pretorius, CEO of Campaigning for Cancer, South Africa; and Amy Samuel, a bladder cancer patient and advocate from Senegal. The session focused on the current state of bladder cancer awareness and the steps needed to achieve further progress in this area.

Raising bladder cancer awareness around the globe

The World Bladder Cancer Patient Forum 2024 in Punta Cana brought together advocates, healthcare professionals, and community leaders from around the world to share their unique approaches to raising awareness about bladder cancer. Through presentations from Italy, Canada, France, and countries across Africa, the Forum highlighted the dedication of advocates working to improve lives for people with bladder cancer.

Laura Magenta, representing Italy’s only bladder cancer patient organisation, Associazione PaLiNUro,

Delivering patient-centred progress in Clinical Trials

At the World Bladder Cancer Patient Forum 2024, a panel of experts joined to discuss patient involvement in clinical trials. Moderated by WBCPC President Dr Lydia Makaroff, the session explored how engaging patients throughout the research process – design, recruitment, and education – can lead to more impactful trials and improved outcomes.

Dr Lydia Makaroff set the stage by highlighting recent data from the WBCPC Global Survey, where 84% of bladder cancer patients reported they did not receive any information about participating in clinical trials.