Starting a bladder cancer support group can feel overwhelming, but with the right resources and a clear vision, it’s possible to create lasting change. One such success story comes from Spain, where CANVES (Alianza por el cáncer de vejiga en España) became the country’s first bladder cancer support group.
Laurent Gemenick, Co-Founder of CANVES, reflects on the journey:
The World Bladder Cancer Patient Coalition’s Start-Up Guide played an important role in this journey,
Setting up a bladder cancer patient group is a journey with many steps. Knowing where to start can be overwhelming, but this updated guide is here to help. Whether you’re just starting or looking to expand your group, our guide offers comprehensive advice, tools, and shared experiences from established organizations worldwide.
Here’s what’s new in this version:
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.
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,
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:
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.
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,
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.
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.
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.
For general information, information about membership or policy information, please contact the WBCPC Secretariat at info@worldbladdercancer.org
For general information, information about membership or policy information, please contact the WBCPC Secretariat at info@worldbladdercancer.org
