The International Kidney Cancer Coalition (IKCC) is an independent international network of patient organisations that focus exclusively, or include a specific focus, on kidney cancer. It is legally incorporated as a Foundation in the Netherlands. The organisation was born from a very strong desire among various national kidney cancer patient groups to network, cooperate and share materials, knowledge, and experiences.
IKCC is governed by a volunteer Board of Directors with members from a minimum of four countries. Organisations may apply to become Affiliate Organisations.
For more information see our IKCC brochure.
Together we are Stronger
Kidney cancer is a global issue. Every year, 338,000 people worldwide will be diagnosed with kidney cancer. Research and clinical trials in kidney cancer take place across continents and many kidney cancer experts sit on international panels. By working together and collecting the experiences of many patients in different countries, we are able to represent the perspectives, insights and experiences of kidney cancer patients from around the world.
We have seen from the experience of other rare cancers that this type of an international network can be very valuable, supportive and inspiring. A lot of rare cancer groups and organisations have limited capacity and resources and embrace the opportunity to be part of a network that allows them to share best practice, information, and to collaborate and work on similar projects.
The idea of IKCC was initiated at the end of 2009 by kidney cancer organisations from around the world. Those original organisations were:
- Das Lebenshaus e.V. (Germany)
- James Whale Fund for Kidney Cancer & Kidney Cancer Support Network (UK)
- Action to Cure Kidney Cancer (USA)
- Kidney Cancer Canada/Assoc. canadienne du cancer du rein (Canada)
- Rarer Cancers Foundation (UK)
- V-Care Foundation (India)
- ACOR – Association of Cancer Online Resources (USA)
The IKCC was initially governed by a “Steering Committee” comprised of leaders from those organisations. In 2013 the Steering Committee was replaced by a Leadership team with a broader base. An Advisory Council comprised of numerous international organisations under the chairmanship of Robin Martinez (USA) provided additional advice to the Leadership Team.
Four international meetings were held by IKCC during this time: Frankfurt 2010, Rome 2012, London 2013, Amsterdam 2014. At each meeting representatives from as over 20 countries on six continents met to share their joys and frustrations, the challenges they face in their local countries, and to learn strategies and gain encouragement from one another.
Through five years of collaboration and negotiation with kidney cancer support groups throughout the world, and learning from the experiences of several successful international coalitions for other medical conditions, and with legal advisors from Europe and Australia, it was determined that the optimal structure for the organisation was as aFoundation based in the Netherlands. The Foundation was formally incorporated on December 9, 2014. The Leadership Team members became the founding Board of Directors of the Foundation.