Kidney Cancer UK Presents Survey at IKCC2018

International Kidney Cancer Coalition (IKCC) 2018 conference in Mexico City

By Lucy Willingale, Kidney Cancer UK Health Professional – Lead.
We at Kidney Cancer UK are proud to be an affiliated organisation of The International Kidney Cancer Coalition (IKCC) and as such I was lucky enough to be invited, at their expense, to attend the annual conference which this year was held in Mexico City. Presenting to the conference our Annual Kidney Cancer UK Patient Survey 2018.

The IKCC is The International Kidney Cancer Coalition, an independent, international network of national patient organisations that focus specifically on kidney cancer on a global scale.
The aims of the conference were:

• To update the patient advocate community with new developments in the rapidly changing field of kidney cancer from better diagnosis to advances in treatment of those with advanced disease.
• To learn from one another and to share good practice with regards to research, clinical trials, patient involvement and looking at real world evidence.
• To build together new partnerships, stimulate networks and to develop stronger patient advocacy in kidney cancer on a global scale.

The conference ran across three days with a series of talks from world renowned health professionals and patient groups. As you would expect there was a wide range of excellent talks and discussions, all of which were very interesting and well attended. Topics such as, ‘Management of Kidney Cancer in the Elderly’ from a advocate’s perspective, Berit Eberhardt from Germany’s patient organisation for people touched by rarer genitourinary cancers (Uronauten e.V) did a wonderful presentation from the perspective of elderly patients. I was equally inspired by external speaker Dr Daniel Heng, Clinical Associate Professor of medical oncology in Calgary, Canada, who gave a wonderful presentation of ‘Kidney Cancer at The Present Time’ which offered so much hope to patients living with kidney cancer. The conference was three full days of sessions starting from 7:30 am. All at once enlightening, inspiring and…. exhausting!
I was so engaged and inspired by all the fantastic speakers and it was a great to see so many charities from around the world exchanging ideas and working together. Being able to meet all the wonderful representatives from kidney cancer charities representing so many countries was incredible. I spent time with Vandana Gupta from the V Care foundation, India, who gave a presentation titled, ‘Management of RCC in countries with limited access to treatments and diagnostics’. Her presentation demonstrated the incredible acts of kindness which happen throughout these countries which have limited access to treatments. Debbie Makens, Vice-Chair of the IKCC, is an inspiration to the kidney cancer community worldwide through her work. I was literally networking on a global level! A very special treat for me was meeting famous Ghanaian actress, Juliet Ibrahim, who undertakes an enormous amount of work across Western Africa raising awareness and fundraising for the poor for treatment in the US, India and UK. An inspirational lady.

Each charity in attendance shared common goals, to learn and improve best practices; to understand what really matters to the patient and their loved ones; to come together collectively and collaborate on a global scale; to make a difference to everyone with kidney cancer. I was able to learn so much about good practice, especially from Stephen Andrews, Executive Director of Kidney Cancer Canada’s presentation on increasing engagement within your community. It was fantastic.
My turn came when I presented the findings of our 2018 Annual Survey and the positive ways we are using our survey’s results. The presentation was met with great applause with many countries so impressed by our survey they have asked to use it in their country. Another great example of how Kidney Cancer UK are sharing best practice and collaborating on a global scale with health professionals and patient groups for the benefit of all patients.
I personally, and Kidney Cancer UK, would like to say a huge thank you to the IKCC committee for all their hard work in creating and delivering a wonderful, uplifting and truly inspiring conference.