Action Kidney Cancer

We are a special type of cancer charity, founded and managed by cancer patients. As patients, we know it’s important to have access to the very best information and practical support. When you join our community of patients, carers, and their families, you are able to talk with others who truly understand how you feel. Kidney cancer is a devastating disease, and within our caring and supportive community you can share experiences and find information, comfort and friendship. It can make such a difference to know you do not have to face kidney cancer on your own.

Action Kidney Cancer was formerly known as the Kidney Cancer Support Network!

The Kidney Cancer Support Network (KCSN) was formed in 2006 when two cancer patients, Rose Woodward and Julia Black, led a three-year “Fight for Life” campaign to allow kidney cancer patients access to the medicines they need via the NHS. Since then, KCSN has provided a safety net for patients who need accurate and up-to-date information, advice, or a friendly and experienced voice at the end of the phone.

Rose and Julia created KCSN to help kidney cancer patients come together to share their experiences and insights, and to help improve knowledge and awareness of kidney cancer. We are both cancer patients who understand the heartache a diagnosis of cancer can bring; our aim is to bridge the gap between the medical team at your local hospital, and the day-by-day reality of living with a diagnosis of kidney cancer.

Over the years, the network has grown to become the largest and most active patient-led network in the UK, and in November 2015 KCSN became a formal charity. As the charity grew, our patient support services developed to include evidence-based and up-to-date information about kidney cancer, a bespoke clinical trials database, a Medical Advisory Board and a community outreach programme. Throughout, we have acquired a huge amount of experience about the management and care of people with kidney cancer.

We provide the patient voice for appraisal of all new kidney cancer treatments in the UK. We also advocate for equal access to cancer treatments and data by lobbying government policy makers together with various coalitions of small charities representing rare and less common cancers.

To accurately reflect the growth of the charity and the nature of our work to actively improve healthcare services for kidney cancer patients, we have changed our name to ACTION KIDNEY CANCER.

Most recently, we have joined forces with the Renal Cancer Research Fund to extend our involvement in research projects and to include the patient voice to further the care and treatment of kidney cancer patients and their families throughout the UK.

It is very important to us that Action Kidney Cancer will always be patient-centred and led by the patients and carers it represents. We welcome everyone whose life has been touched by kidney cancer. Join us and share your experiences, raise awareness of kidney cancer, support research and help others. Together we can make a real difference to the lives of our fellow patients.

From diagnosis, through treatment and beyond, we aim to promote access to the best possible care and treatment for kidney cancer patients to improve quality of life and ultimately patient outcomes. Our experienced team is here to offer guidance, support, education, and information to anyone affected by kidney cancer. Over the phone, online or face-to-face – we are here, every step of the way.

With warmest wishes from

Rose and Julia