The IKCC (International Kidney Cancer Coalition) is an independent international network of patient organisations that focus exclusively, or include a specific focus on, kidney cancer. It is incorporated as a Foundation in the Netherlands as Stichting [Foundation] IKCC, or simply “IKCC”.
IKCC is governed by a Board of Directors with members from a minimum of four countries.
The Coalition is run according to democratic principles and is not bound by national, political, religious or economic interests. Beginning in 2015 organisations may apply to become formal Affiliates, and a representative body from among these Affiliates works with the Board to determine the annual goals and objectives of the Coalition.
Day to day functions are carried out by an Administrative staff consisting of Markus Wartenberg, Administrator, and Julia Black, Project Leader.
The IKCC Board of Directors hold regular meetings, both in-person and via electronic means, and will inform our Affiliate organisations and stakeholders through our website (ikcc.org), an Annual Conference, and a regular e-newsletter.
Participation with IKCC is open to all global, national and regional cancer patient organisations. We extend an open invitation to every organisation with an interest in kidney cancer to consider application as an Affiliate Organisation. We also welcome individuals who are strongly motivated and engaged in the process of starting kidney cancer support groups in their own countries. Please see our information about Joining.
IKCC affiliated organisations must abide by our established “Code of Conduct” in addition to strict ethical guidelines for charities and non-profits according to their own national contexts.
More details regarding IKCC governance, membership and other organisational issues are delineated in the Deed of Incorporation (English) and in our policies and procedures.
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 a Foundation 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.