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IKCC End of Year Message 2022

As we close in on the end of 2022, it’s a time to reflect and look back on all that’s happened over the past 12 months. It has been a year of recovery and re-establishing our bonds. Strengthening and expanding our presence, both regionally and globally. And remaining committed to ensuring patients’ perspectives are represented when decisions about kidney cancer are made. It’s been a very full year, with many accomplishments to highlight.

Connection continues to be at the centre of everything we do. For the first time in three years, Affiliate Organisations came together at the 12th Global Kidney Cancer Summit in Orta San Giulio, Italy. It was so special to be together and strengthen our bonds. Collaborating, sharing our challenges and learning from each other – we are still buoyed by the energy. We’re excited to announce the next Summit will be held on 18 – 20 June 2023 – more details to come.

We also connected with the European Union Parliament at the first Round Table on Kidney Cancer, where policy makers, patients and clinicians came together to highlight the need to address EU funding for kidney cancer research, which is currently not in line with incidence or burden of disease.

This year IKCC and Affiliates helped gather the insights and experiences of people affected by kidney cancer in the 3^rd Global Patient Survey. More than 2200 people participated and we’re looking forward to sharing the results later next year and continue to accurately represent kidney cancer patients. This year alone, we served on the National Comprehensive Cancer Network (NCCN) and European Association of Urology (EAU) guideline panels for kidney cancer and published 19 papers (a record!). In addition, Dr Michael Jewett, Chair of IKCC’s Medical Advisory Board presented at the EAU Annual Conference about patient engagement in healthcare decisions.

We also became involved in some unexpected but very important work supporting cancer patients in Ukraine in collaboration with the European Cancer Organisation, other European networks and the Rakiety Foundation.

And through this all, the Coalition continues to grow with three new Affiliates joining this year. European Kidney Patients’ Federation in Austria, Wilms Cancer Foundation in Canada, and Association for VHL Affected Families in Germany – we’re so glad you’re here.

Can you believe, this only scratches the surface of what we accomplished together? We can’t forget the amazing efforts of the global kidney cancer community coming together on World Kidney Cancer Day to say – We need to talk about treatment options. Or the launch of the newest My Treatment, My Choice decision aid on clinical trials (basics).

Here’s to a great year – It was achieved through partnership, collaboration and a shared commitment to improving the lives of people living with kidney cancer around the world. A sincere thank you to everyone who contributed to and supported these efforts.

In partnership,
Rachel Giles
Chair, IKCC Board of Directors