An Open Letter on Behalf of the International Kidney Cancer Coalition (IKCC)

Kidney Cancer Canada is proud to be an active member of a growing international network of kidney cancer organizations known as the IKCC (International Kidney Cancer Coalition). I hope you will all share our hope that, by working together, we can amplify our voices and improve treatment and care for kidney cancer patients around the world.

December 18, 2011

Open letter from IKCC Steering Committee to the international kidney cancer community

Dear Readers,

As we approach the festive season and look to the start of a new year in 2012, we thought this would be a good time to provide an update to patient organizations, patients, and caregivers on the activities and plans of the International Kidney Cancer Coalition (IKCC).

The Founders and Steering Committee Members of IKCC – many of whom are kidney cancer patients or caregivers themselves – are all leaders of respected national or regional charities and organizations from around the world. In addition to the work we do to support kidney cancer patients in our own countries, we are committed on a voluntary basis to devote our time and efforts  to develop an international network of kidney cancer organizations to share best practices, share information and experiences and learn from one another.

IKCC is a patient-led voluntary coalition. We do not seek to undermine any existing organization, nor do we intend to form a “super organization” that would replace or duplicate the work of any existing organization. The idea of an international coalition of disease-specific groups is not new. In 2010, the independent European Patient Directory noted 180 European umbrella organizations and networks established in Europe. In addition there are many more acting worldwide including:

• The Global Lymphoma Coalition http://www.lungcancercoalition.org/
• The International Brain Tumour Alliance http://www.theibta.org/
• Myeloma Euronet http://www.myeloma-euronet.org/
• Europa Donna http://www.europadonna.org
• Europa Uomo http://www.europa-uomo.org/
• Sarcoma Patients EuroNet http://www.sarcoma-patients.eu
• and many others.

Many of these international networks are firmly established today. They are working peer-to-peer with important societies such as ASCO, ESMO, ECCO, EORTC, ESSO, expert-groups, researchers, the healthcare industry and other stakeholders to improve the situation of their national member groups representing many patients and their families. Our intention is to develop such a valuable international network for kidney cancer to truly represent patient voices from around the world.

The people involved in IKCC are friendly, open-minded, and positive people who simply wish to collaborate with others to improve the lives of kidney cancer patients wherever those patients  live. For us, this is not about making money or building a business or a brand. We are not in competition with any other group, but we seek to  build a collaborative network of individual organizations who want to work together to improve the lives of  patients with kidney cancer. We are respectful of the differences between organizational cultures, mandates and operations of each of our member organizations and we want to carry out our work in a positive manner.

Our second conference for international patient organizations is planned for March 10-13 in Rome, Italy. We welcome every organization that has an interest in kidney cancer and we will continue to extend an open invitation to all groups to become a part of this international network. We also welcome individuals who are interested in starting kidney cancer support groups in their own countries where there is an unmet need. Funding for this conference has been provided by unrestricted grants from the healthcare industry as is the well-established practice for other international coalition organizations.

We welcome your thoughts and input as we work together positively to build an open and inclusive international network. Please feel free to visit ikcc.org or contact us individually or directly at ikcc_expanding_circles@lebenshauspost.org

Sincerely,

The IKCC Steering Committee

• Deb Maskens                             Kidney Cancer Canada / Association canadienne du cancer du rein, Canada
• Markus Wartenberg               Das Wissenshaus GmbH, Germany
• Berit Eberhardt                        Das Lebenshaus e.V. Kidney Cancer, Germany
• Vandana Gupta                        V Care Foundation , India
• Rose Woodward                       Kidney Cancer Support Network, UK
• Andrew Wilson-Webb            Rarer Cancer Foundation, UK
• Gilles Frydman                         ACOR – Association of Cancer Online Resources, USA
• Jay Bitkower                              ACKC – Action to Cure Kidney Cancer USA
• Robin Martinez                         KIDNEY-ONC Global Listserv, USA
• Dr. Rachel Giles                        University Medical Center Utrecht , Netherlands
• Andy Thomas                            Kidney Cancer Resource, UK

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