One voice, global reach

IKCC was initiated by visionary patient advocates who shared a very strong desire to network, cooperate, and share materials, knowledge, and experiences around the world.

The first Global Kidney Cancer Summit was held in Frankfurt, Germany, bringing together patient organisation representatives from 5 continents to learn from each other, share successes and challenges, and help build capacity across the kidney cancer network. It is now an annual event.

IKCC incorporated as a Foundation in the Netherlands, formalising the organisation’s governance structure, as outlined in our Deed of Incorporation.

The Workgroup of European Cancer Patient Advocacy Networks (WECAN) was established when 15 cancer patient advocacy organisations, including IKCC, came together to initiate an informal network focused on sharing experiences and working together.

The first My Treatment, My Choice First Decision Aid was published. Offering patients and carers comprehensive and credible information about kidney cancer and treatment options allows them to participate in shared decision-making and be active participants in their care.

The first World Kidney Cancer Day campaign was launched. The inaugural campaign focused on raising awareness for kidney cancer by asking questions and seeking answers to help reduce the burden of the disease. World Kidney Cancer Day is now an annual global event recognised on the third Thursday in June.

The IKCC Clinical Trials Database was launched. For the first time, patients, carers and healthcare professionals could access a comprehensive clinical trial database focused on kidney cancer research.

The first Global Patient Survey on Kidney Cancer launched to address an evidence gap in research about the kidney cancer patient experience worldwide. The biennial survey is foundational to creating education, awareness and advocacy programs that respond to the needs of people affected by kidney cancer.

The IKCC Medical Advisory Board was established to provide scientific and clinical expertise to IKCC. With a commitment to multidisciplinary expertise and global perspectives, the MAB focuses on education, information dissemination and patient engagement in kidney cancer care.

The Global Cancer Coalition Network was created in response to concerns about the impact of COVID-19 on cancer patient organisations globally. As a founding member, IKCC collaborates with other global cancer coalitions to share experiences and best practice.

Partner Organisation representative positions were added to the IKCC Board of Directors to share perspectives related to living with kidney cancer help IKCC maintain its patient-centricity across all programmes and initiatives.

The Clinical Leadership Development Workshop was launched to support clinician-patient engagement in cancer care and create opportunities for clinicians to learn from patient advocates.

IKCC became a collaborating member of European research projects, the DISCERN Project and the CARE1 Pragmatic clinical trial, with a focus on bringing patients’ experiences and values to these initiatives. In 2025, IKCC joined the COMFORT Project.

The Seed & Grow Pilot Project Fund launched, inviting IKCC Partner Organisations in lower- and middle-income countries (LMIC) to apply for funding for any project that includes a focus on kidney cancer.

IKCC formalised a strategic partnership with The Max Foundation to improve outcomes for people living with kidney cancer in low- and middle-income countries (LMIC).