IKCC reports news of new developments in the world of kidney cancer research and treatment and announced next year's conference.
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A word from the Co-Chairs….
Dr. Rachel Giles, NL
Deb Maskens, CDN

It has been a busy time for the IKCC!  Since our annual meeting in Amsterdam we  have been riding tremendous momentum with several projects moving forward. Below are some highlights summarized for you to review and share with your organizations:

New: Amsterdam Patient Charter for Global Kidney Cancer Care

One result directly stemming from our conference in Amsterdam is a new global patient charter for kidney cancer care. Following the conference in April, we asked the 34 groups present to prioritize 10 statements according to the needs of kidney cancer patients in their own country. The results of the survey were drafted into a Patient Charter.
We are thrilled that the leading urological journal European Urology (impact factor 12.5) has accepted our “Amsterdam Patient Charter for Global Kidney Cancer Care” for publication.  
We are grateful for everyone’s participation in realizing this valuable document!
We are preparing a press release and will translate the Charter into a number of different languages for distribution among affiliate members. Separate communication will follow.

Leadership Team Meeting

The Leadership Team met in Frankfurt, Germany, 4-7 September for our annual planning meeting. We spent three productive days reviewing current and future projects, shaping our governance, and forming strategy for the next years. Representatives from Australia, Canada, Germany, the Netherlands, South Africa, and the United States were present. We won’t have an opportunity to work face-to-face again until April 2015, so this was a great opportunity to benchmark a number of projects, and to plan our upcoming conference.

Next Conference 16-18 April 2015

Our next annual Expanding Circles IKCC conference will be held in New Jersey (USA) 16-18 April 2015. Five potential venues were visited by Deb Maskens and Markus Wartenberg last month. We generated a preliminary program and identified some speakers, largely based on the feedback provided by attendees at the Amsterdam meeting and input from our Advisory Council. The conference working group (Deb Maskens, Joyce Graff, Rose Woodward, and Julia Black) will finalize the program in the coming months. Information will be distributed as soon as it becomes available.

Lifetime Achievement Award: Dr. Peter Boyle

Dr. Peter Boyle, of the University of Stathclyde in Glasgow, Scotland, keynote speaker at our Amsterdam Conference 2014, received the Lifetime Achievement Award from the European Society of Medical Oncology (ESMO) in October 2014, recognizing his long-standing contributions to cancer epidemiology, education and prevention.
Read more

Afinitor approved in Australia

After 5 years of submissions, Novartis announced in September that Afinitor will be PBS-listed in Australia (this means it will be subsidised) for the treatment of patients with Stage IV clear cell variant RCC, who have progressive disease following first-line treatment with a tyrosine kinase inhibitor (TKI) or who have developed intolerance to a TKI.  Read more

Kidney tumors in children

by Timothy D. Klasson, Kidney Cancer Researcher, University Medical Center Utrecht, the Netherlands
The incidence of renal tumors is increasing among children and adolescents in the United States, according to research published in Pediatrics. The study by David A. Siegel, MD, MPH, of Emory University (Atlanta) and his colleagues finds "that renal carcinoma rates are increasing among children and adolescents ... and further describes rising cancer rates among African Americans." 
Read more

Amsterdam Report Available

The final report from the IKCC “Expanding Circles” 4th International Conference in Amsterdam, April 2014, has been released.  Printed reports are available from Julia Black in the office.  The pdf file is downloadable from the internet at

Taking the Guesswork out of Cancer Therapy

Researchers and doctors at the Institute of Bioengineering and Nanotechnology (IBN), Singapore General Hospital (SGH) and National Cancer Centre Singapore (NCCS) have co-developed the first molecular test kit that can predict treatment and survival outcomes in kidney cancer patients. They have developed a practical way of examining eight genes involved in essential cellular functions in clear cell kidney cancer, to estimate the likelihood that the patient will benefit from TKI therapy.This breakthrough was recently reported in European Urology, the world's top urology journal. Read more
Thank you for your many contributions to our expanding global network of patient organizations committed to advancing the care of kidney cancer patients. As always, your input and participation are most welcome!

Best wishes

and the IKCC Leadership Team:
Anne, Berit, Michael, Rose, and Joyce

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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