About IKCC

IKCC is a global collaboration of patient organisations that empowers and represents the kidney cancer community through advocacy, awareness, information and research.
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The IKCC Global Network

IKCC welcomes every organisation that has an interest in kidney cancer and extends an open invitation to all groups to become a part of this international network. IKCC also welcome individuals.
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Immunotherapy Combination Denied Regulatory Approval in Europe

The Committee for Medicinal Products for Human Use (CHMP), part of the European Medicines Agency, has handed down a negative opinion on the approval of combination ipilimumab and nivolumab for the frontline treatment of advanced renal cell carcinoma. The main reason for this decision is the lack of a nivolumab monotherapy arm in the study. This decision currently leaves a treatment with up to 16 percent complete response rate in intermediate and poor risk disease groups unavailable to European patients. This combination therapy leaves much to be desired, including a high requirement for steroid use to manage side effects, and significant cost. However, the clinical efficacy is indisputable, and in patients with intermediate and poor risk features, clearly superior to the comparator, sunitinib, in terms of overall survival with an impressive hazard ratio of 0.63 and quality of life improvement across the entire treatment period.

We anticipate an appeal to this decision, with the hope that this combination therapy will be made available to European patients with advanced RCC possessing intermediate and poor risk features. We would welcome a conditional approval, coupled with prospective testing of the ipilimumab-nivolumab combination against nivolumab monotherapy in the frontline setting. This would allow patients access to this regimen in the meantime, and provide valuable additional information.

As the global coalition of kidney cancer patient organisations, the IKCC remains committed to supporting patient organisations throughout Europe with evidence-based treatment information to inform best quality care according to international and European guidelines for renal cell carcinoma.

If you have any questions or need further information, please contact:

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World Kidney Cancer Q&A Day

World Kidney Cancer Q&A Day is on 21 June 2018

Leading up to the second World Kidney Cancer Day, people all around the world will be asking questions and looking for answers to help raise global awareness of kidney cancer.

World Kidney Cancer Day provides the opportunity for patients, carers, their friends and supporters, health care professionals and local kidney cancer organisations, to come together to raise awareness and start to answer those questions that will make a difference to stemming the growth of this cancer. Our aim is to rapidly grow global awareness of Kidney Cancer and encourage people to share what they know about this disease. Read more about World Kidney Cancer Day here.

Take our 2-minute quiz here at worldkidneycancerday.org

For more videos please read full post. 

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ASCO Highlights from the International Kidney Cancer Coalition (IKCC)

Note: The following summary was prepared for the benefit of patient organisations who focus on kidney cancer. While this summary has been medically reviewed, the information contained herein is based upon public data shared at this meeting and is not intended to be exhaustive. Patients should ask their physician about any information that pertains to their care.

The American Society of Clinical Oncology (ASCO) Conference in Chicago June 1-5 2018 brought together oncology professionals, patient advocates, and organisations from around the world. For kidney cancer specifically, the conference included the presentation of results from one large blockbuster surgical trial, and several smaller studies in kidney cancer that may influence practice. Here are four studies that were of particular interest.

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2018 Annual Conference

Our 8th IKCC Conference for kidney cancer patient organisations recently held in Mexico City, Mexico was a huge success with over 50 kidney cancer patient advocates from 25 countries attending . Throughout the three-day meeting patient organisation leaders learned about latest developments in kidney cancer care, discussed active patient involvement and shared experiences with national healthcare policies. This meeting was held alongside a Clinical Experts meeting hosted by the Latin American Renal Cancer Group (LARCG) the Mexican Society of Urology (SMU) and the Mexican Association of Urological Oncology (MAUO). During the Annual General Meeting, Dr. Rachel Giles, Chair of IKCC, announced the organisation’s inaugural Medical Advisory Board.

For information about the conference and the new IKCC Medical Advisory Board please click here:
IKCC News Item 2018-04

For information on our past conferences please click here

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IKCC Book of Courage and Hope

We are pleased to present the Book of Courage and Hope. This collection of the stories of patient experiences and the support provided by our affiliates in many of the countries represented among our Affiliates helps to demonstrate the important work of our Affiliates, and of the International Kidney Cancer Coalition in supporting and encouraging those Affiliates. Read about the important work of kidney cancer care around the world.

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