Formal incorporation announced, important dates, breaking news
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Announcing Stichting IKCC!

IKCC logoIKCC is now a registered Foundation in the Netherlands

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 organization 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.  Read more about our history and structure.

Under the Constitution, organizations may apply for Affiliate Status.  Please click here for information on what that means and how to apply.  The Board of Directors will be considering applications for Affiliate Status at its meeting in July.

Moving our Website - done!

We are improving the website, and have moved to a newer platform with better mobile device support. This updated copy of the newsletter contains the updated links.  If you try to click on links in the original version they may or may not work properly.  When that happens please go to and look under Newsletters to find the online copy of this newsletter with the corrected links.  Thank you for your patience as we make this major upgrade - we hope you enjoy the new benefits!

Patient Advocates course on the Methodology of clinical studies in rare cancers
Milan, Italy, 20 July 2015

Rare Cancers Europe (RCE) is offering a course for patient advocates on the methodology of clinical studies in rare cancers.  Registration is free.  To inquire about registration, please contact Francesa Longo at Rare Cancers Europe RCE:   Click here for additional information.

More than 4.3 million people in the European Union are affected by rare cancers. Despite the rarity of each of the 198 rare cancers, they represent in total about 22% of all cancer cases, including all cancers in children, diagnosed in the EU28 each year. IKCC is a member of RCE.

Historic Morristown, New Jersey5th International Conference for Organisations Representing Patients with Kidney Cancer

45 delegates from 25 countries met in Morristown, New Jersey, in April for our fifth international conference.  Nicole Giroux, the delegate from Cancer du rein Canada, filed this report.  Selected recordings will be made available at

Global CharterAmsterdam Charter Announced

IKCC is providing translations of the Amsterdam Charter in multiple languages to help you spread the word about this important document.  One important urologist reported “that his head had been turned” by IKCC's work.  Already this document is helping to reshape the relationship between doctors and patients in many countries.  How can you use it to best advantage in your own environment?

As one example, the Amsterdam Charter was included in the June 2015 VISION e-newsletter of CanSurvive Cancer Support Groups in South Africa.  Click here to read the article on page 6.

Operating room sceneRisk of end-stage renal disease (ESRD) is lower with partial rather than radical nephrectomy

Patients with renal cell carcinoma (RCC) are at lower risk of needing dialysis and transplant if they undergo partial rather than radical nephrectomy, a new study suggests.  “Although it is well-known that RN is associated with more chronic kidney disease than partial nephrectomy (PN), we provide the first direct evidence that PN is associated with less ESRD requiring renal replacement therapy than RN in a modern cohort of patients with RCC,” the authors concluded.  Read more

World Health Organization logoWHO endorses All Trials Campaign

The World Health Organization (WHO) has issued a strong statement in support of a multinational effort, the AllTrials campaign ( ) for public disclosure of all clinical trial results, no matter what the outcome.  Too often unfavorable results are suppressed, providing a less than complete view of the real outcomes of drug or other therapy.  Read more

Urine testUrine biomarkers diagnose malignant clear cell or papillary RCC

Urine aquaporin-1 (AQP1) and perilipin-2 (PLIN2) seem to have some usefulness as biomarkers for diagnosing malignant clear cell or papillary renal cell carcinoma (RCC) in a screening paradigm, according to a study published online March 19 in JAMA Oncology.  Read more

American Society of Clinical Oncology logoHeadlines from ASCO

Deb Maskens posted a very informative report from the American Society for Clinical Oncology (ASCO) at Kidney Cancer Canada.  The overall message from ASCO 2015 is that the field of cancer treatment is changing rapidly and patients should seek out an expert for advice beyond what their local urologist or oncologist may know.  "Words such as “practice-changing” and “breakthrough” were heard often, but there is also room for some caution while we await more information from upcoming trials.

"Most of all, we heard from many, many presentations that we are ALL indebted to the many cancer patients and their families who have engaged in previous trials and who will continue to contribute to moving this research forward. Thank you!"  Click here for her full report.
Save the date!Please SAVE THE DATE for our next Expanding Circles conference -
14th to 16th April 2016 in Europe. 
Watch for information on expressing your interest in attending.
We look forward to working with you to further improve diagnosis, treatment, and quality of life for people with kidney cancer throughout the world, and to empower them to be partners in their healthcare.

Rachel, Deb
chel Giles, M.D., Ph.D., Chair
Deb Maskens, Vice Chair
and the Board of Directors, Stichting IKCC

The IKCC is dedicated to global collaboration to raise awareness, promote research and empower organisations to support those affected by kidney cancer.
Copyright © 2015 International Kidney Cancer Coalition (IKCC), All rights reserved.

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