First Conference of International Kidney Cancer Coalition Gives Voice to National Patient Groups…
Organizations from 19 countries, 5 continents support new international network.
FRANKFURT, Sept. 13 2010
Patient advocacy groups from 19 countries across 5 continents met in Frankfurt/Germany for an innovative conference, “EXPANDING CIRCLES in Supporting Kidney Cancer”, from Sept 10 – 12. Delegates from national patient support and advocacy organizations met for the first time to exchange best practices among national groups and work together on projects of international interest to the kidney cancer community.
Patient advocacy groups celebrated the new International Kidney Cancer Coalition (IKCC) as an independent, democratic network that will both strengthen
- existing national organizations and
- in the future – the development of new groups interested in this rare but increasingly prevalent cancer.
Joined by expert kidney cancer oncologists from the United States, India, Germany, the United Kingdom and Canada, patient group delegates proposed a number of initiatives that require an international focus.
“We are thrilled with the delegates’ endorsement of IKCC and the need for a collaborative international network”, Markus Wartenberg, Executive Director, Das Lebenshaus e.V., a German patient support and advocacy organization committed to improving quality of life for patients living with kidney cancer. “Patient groups like ours have long sought an opportunity to collaborate on clinical research priorities at the international level.”
Based on the success of this first conference, the IKCC will be reaching out to other national patient organizations to join the network. “IKCC offers national groups the opportunity to share best practices and resources” says Rose Woodward, Founder of the UK Kidney Cancer Patient Support Network. “As patient-led organizations, we have limited resources to address to specific needs of patients in our countries. We were already in partnership with the James Whale Fund for Kidney Cancer in the UK. The IKCC will facilitate collaboration on projects and allow us to share openly with one another across national boundaries.”
“The IKCC conference was truly unique in the world of kidney cancer” says Gilles Frydman, Founder of the global ACOR (Association on Online Cancer Resources) and KIDNEY-ONC listserv with over 2,000 members worldwide”, adding “the trend towards patient-driven research will demand a global focus.”
Patient groups from India also commented: “The IKCC gives an opportunity to work across borders in a culturally sensitive and respectful collaboration,” says Vandana Gupta, V-Care Foundation based in Mumbai “and we look forward to growing our patient support capabilities in India as a direct result of this conference.”
About the International Kidney Cancer Coalition (IKCC)
IKCC is an independent, democratic network of patient support and advocacy organizations established with the mission of improving the quality of life of patients and their families living with kidney cancer. IKCC provides information, support, and assistance to national kidney cancer organizations. All organizations are welcome to participate. For more information about the International Kidney Cancer Coalition, visit www.ikccv2.wpengine.com
For more information please contact:
Deborah Maskens
Chair
Kidney Cancer Canada
debmaskens@kidneycancercanada.ca
OR
Markus Wartenberg
Executive Director
Das Lebenshaus e.V. Germany
wartenberg@lebenshauspost.org
