AN INTERNATIONAL VOICE FOR KIDNEY CANCER PATIENTS

 

Rose Woodward writes ……………..

First Conference of The International Kidney Cancer Coalition Gives Voice to National Patient Groups

Organizations from 19 countries, 5 continents support new international kidney cancer network

FRANKFURT, Sept 13 2010 – Patient advocacy groups from 19 countries across 5 continents met in Frankfurt for an innovative conference, “Expanding Circles in Kidney Cancer”, from Sept 10-12. Delegates from national patient support and advocacy organizations from around the world 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 support existing national organizations and nurture the development of new patient-led groups interested in this rare, but increasingly prevalent cancer. Joined by leading kidney cancer oncologists from the United States, India, Germany, the United Kingdom and Canada, patient group delegates debated and proposed a number of initiatives that require an international focus.

“We are thrilled with this clear endorsement of IKCC which reinforced the need for a collaborative international network, Markus Wartenberg, Executive Director, Das Lebenshaus, 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 to help more patients ” says Rose Woodward, Founder of the UK Kidney Cancer Patient Support Network and Patient Advocate for the James Whale Fund for Kidney Cancer . “As patient-led organizations, we all have to use our funds very carefully, in the UK we  already work in close partnership with the James Whale Fund for Kidney Cancer and the Kidney Cancer Resource, but through the IKCC we will collaborate on many more projects and share our resources 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 attended the Conference . “the IKCC provides an opportunity to work across borders in a culturally sensitive and respectful collaboration,” says Vandana Gupta from VCare 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 kidney cancer organizations are welcome to join the IKCC . An open invitation exists for all kidney cancer groups where ever they are in the world, to join with us and provide a  global voice for  kidney cancer patients. 

For more information about the International Kidney Cancer Coalition, visit www.ikcc.org

For more information please contact:

Rose Woodward -  Email – rw@jameswhalefund.org
Patient Advocate
The James Whale Fund for Kidney Cancer
www.jameswhalefund.org & www.kidneycancersupportnetwork.co.uk

07896.88 20 84

Posted under Rose Woodward

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