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Message from our Chair


We are pleased to share the most recent IKCC newsletter with you!

In this edition, we look back at some key achievements for IKCC and the community of Affiliate Members, and also what the next several months will hold. Highlights include IKCC’s second online Global Kidney Cancer Summit, which strengthened connection throughout the kidney cancer community, and the launch of the results of IKCC’s second Global Patient Survey.
We are also excited to announce three new members joining the IKCC Board of Directors. As part of the changes made to the IKCC constitution in August, Affiliate Organisations were invited to nominate a representative to join the Board for a one-year term. We are pleased to welcome Christine Collins from Kidney Cancer Canada and Liz Leff from the National Kidney Foundation, USA. In addition, Margie Hickey, a long-time supporter of IKCC, will be joining the Board. You can read their biographies on our website.

As you read on you will see so much has been achieved in 2021 – we are thrilled. It is thanks to collaborations of a united community committed to reducing the global burden of kidney cancer.
In partnership,
Rachel Giles
Chair, IKCC Board of Directors

New Board Members

We are pleased to welcome Christine Collins from Kidney Cancer Canada, Liz Leff from the National Kidney Foundation (NKF) in the USA, and Margie (Margaret) Hickey, a long-time supporter of IKCC also from the USA, to the IKCC Board of Directors. Please see the IKCC website for their biographies.

Christine Collins from Kidney Cancer Canada          

Margie (Margaret) Hickey from the USA
Liz Leff from the National Kidney Foundation (NKF) in the USA

Save the Date: World Kidney Cancer Day 2022

Save the date for the 6th World Kidney Cancer Day on 16 June 2022. Join patients, families, friends, carers, healthcare professionals, researchers and local kidney cancer organisations from around the world come together to raise awareness of clinical trials and access to treatment. To improve the lives of kidney cancer patients worldwide 'We need to talk'.

For more information about World Kidney Cancer Day 2022, please visit our website or email wkcd@ikcc.org

IKCC Roundtable: Focus on Asia

IKCC’s mission is to empower and represent the kidney cancer community through advocacy, awareness, information and research. As a global collaboration of patient organisations, it is imperative that supporting all regions around the world is a priority.
In 2020, the Board of Directors made the strategic decision to increase efforts to engage with patient organisations in Asia and help strengthen the patient voice in that region. Part of that effort was to host the 2020 Global Kidney Cancer Summit in Singapore, which unfortunately did not happen due to the pandemic.
As a next step, IKCC will be hosting a virtual meeting called IKCC Roundtable: Focus on Asia at the end of November. Patient organisations and others in the kidney cancer community across Asia will be invited to join a conversation to discuss the region’s unique needs and map out a plan forward.
If you are interested in learning more about the roundtable, please contact Julia Black at julia@ikcc.org.

IKCC Global Kidney Cancer Summit 2021

We would like to thank everyone for taking the time out of their busy schedules to attend the 11th IKCC Global Kidney Cancer Summit on 24th and 25th September 2021. The online report from the Global Summit can be found on the IKCC website.

IKCC Global Patient Survey 2020

The Global Patient Survey 2020 Highlights Report, Mapping the Kidney Cancer Experience Worldwide, is available on the IKCC website. The easy-to-read resource shares the survey’s key findings as well as commentary and recommendations from kidney cancer experts. There is also an infographic along with country reports (where the survey was completed by more than 100 people) via the same link.  
Thank you to everyone who participated in the Global Patient Survey.  

Highlights from our affiliate organisations

This section profiles the important work that our affiliate organisations do to support kidney cancer patients. Please see the IKCC website for a full list of organisations in our global network. Please get in touch if you would like to contribute to the next newsletter.


VHL Alliance USA
VHL Alliance USA (VHLA) is a non-profit organisation founded in 1993. Today, we are the world’s leading organisation supporting von Hippel-Lindau disease. The work of the VHL Alliance is about education, support, clinical care, research, and awareness. We are the pre-eminent resource for VHL patients, caregivers, and the medical community. We empower patients to actively manage their health by making educated decisions, including seeking the best of care. We are a leading funder of VHL research, and support studies designed to find a cure for VHL. Curing VHL is one step closer to curing many other forms of cancer, including breast, kidney, colon, lung, pancreatic, prostate, and adrenal. VHLA and the VHL community in the USA are celebrating a breakthrough in the treatment of VHL with the recent FDA approval of belzutifan, a first-of-its-kind oral medication for treating patients with VHL. 

Association of Cancer Patients in Finland
The aim of the Association of Cancer Patients in Finland is to safeguard the best possible support for cancer patients and their loved ones during treatment and rehabilitation. We are active in patient advocacy and involved in the national Health Technology Appraisal (HTA) processes. We maintain a comprehensive and topical selection of patient guides. The aim of the guides is to support cancer patients and their loved ones in obtaining information about cancer. We also run network groups for specific cancer types on Facebook. The patient networks allow you to meet others who suffer from the same cancer. In the patient network, you can share illness-related issues with other patients. The patient networks mainly operate in Finnish.

Patient perspective on adjuvant immunotherapy for kidney cancer

In May 2021, the IKCC ran a short poll of kidney cancer patients to gauge their attitude towards adjuvant treatment with immunotherapy. The poll included 141 patients with locally advanced RCC from 8 countries (USA, Canada, UK, Germany, the Netherlands, France, Denmark, and Belgium). Forty percent (40%) of patients said they would take an immunotherapy treatment after surgery for a 50% reduction in the risk of the cancer returning. Only 9% said they would not take adjuvant immunotherapy at all. In the same poll, over a quarter of patients were willing to accept a 25% risk of having side effects to adjuvant immunotherapy that required treatment with steroids. 

See the results of the poll here: Infographic: IKCC poll for adjuvant IO for RCC

Kidney cancer news

A study published last month in JAMA Oncology showed that cabozantinib reduced the size of brain metastases without being toxic to the brain.

Brain metastases resulting from the spread of RCC are especially difficult to treat because drugs are prevented from getting to the brain by a membrane called the blood-brain barrier. Also, patients with brain metastases from RCC are not allowed in most clinical trials, and there is an unmet need for treatment of these patients. 

This was a retrospective study of 88 patients with brain metastases from RCC, 33 of which had progressive cancer and 55 had stable disease. Response rates were 55% and 47% for patients with progressive or stable disease, respectively. The average time to when the treatment stopped working was 8.9 and 9.7 months and the overall survival time was 15 and 16 months for patients with progressive or stable disease, respectively. 

Cabozantinib was well tolerated, with no unexpected side effects or treatment-related deaths.

In this study, cabozantinib was effective and safe for the treatment of brain metastases from RCC.

European Association of Urology Annual Congress: Call for patient abstracts

Since 2012, the European Association of Urology (EAU) has looked to involve patients and their families in its mission to improve the care of patients with conditions/diseases that affect the kidneys and urinary system. Well-informed patients are better able to talk about their conditions and treatments, leading to a more meaningful discussion with their doctor and better healthcare.

The EAU have, therefore, introduced a Patient Poster Session. The main purpose of the Patient Poster Session is for healthcare professionals to work directly with patients and to provide a means (the EAU Annual Congress) where the patient’s voice is heard, to improve communication with healthcare professionals, identify patient needs and, ultimately, to improve patient outcomes.

Please visit the EAU website for more information about how to submit a patient abstract. 

The deadline for submission of abstracts is Wednesday 1 December 2021.

Global Cancer Coalitions Network

IKCC is a member of the Global Cancer Coalitions Network (GCCN) along with 8 other global coalitions and alliances. The GCCN are holding a free online event on 23 November 2021 about COVID-19 vaccines and cancer; if you would like to attend this event, please register here or follow the instructions below:
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