Our partners

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Our charity partners

We work together with a number of cancer patient organisations on various advocacy projects and policy work. We also receive help, advice and information from these organisations that we share with our community. Below is a list of the patient organisations that we are currently partnering with:

International Kidney Cancer Coalition (IKCC)

IKCC is an independent and democratic network of patient support and advocacy organisations established with the mission of improving the quality of life of patients and their families living with kidney cancer. IKCC provides information, support and assistance to national kidney cancer organisations. All organisations are welcome to participate. Action Kidney Cancer was one of the founding members of the IKCC and Rose Woodward served as a volunteer member of the IKCC board.

Friends of Renal Oncology Group (FROG)

The Friends of Renal Oncology Group (FROG) provides information and support in a friendly and informal group. They also host interesting and informative speakers, ranging from medics with the latest information on therapies and treatments, to practical advice on subjects as diverse as dealing with side effects to getting travel insurance. Kidney cancer patients, family and friends are all welcome to attend in-person meetings in Oxford or virtual meetings via Zoom.


When Cancer52 was initiated, 52 per cent (recent statistics show an increase to 54%) of UK cancer deaths were from less common cancers. Despite this, less common cancers remain severely under represented and under-funded across all areas, including policy, services and research. Cancer52 is an alliance of over 100 organisations working to address this inequality and improve outcomes for patients with these highly challenging diseases.

Action Kidney Cancer is working with Cancer52 to improve awareness of rare and less common cancers, improve NHS cancer services for people with these cancers, and improve access to kidney cancer data from Public Health England.

One Cancer Voice (Cancer Research UK)

One Cancer Voice is a coalition of 47 cancer charities, led by Cancer Research UK to speak with One Cancer Voice on what we need from UK Governments and the NHS to plot a route out of the COVID-19 pandemic and towards world-leading cancer services. Our statement is not about looking backwards, but recognising the efforts of those on the front line and looking forwards. It’s about recognising the needs of people affected by cancer and those that care for them. It’s about setting out, collectively, what needs to happen to get our shared ambitions to beat cancer back on track.

All.Can UK Working Group

Action Kidney Cancer is a member of the All.Can UK Working Group that campaigns on behalf of cancer patients for improvement in NHS services. All.Can UK is a multi-stakeholder initiative involving patient groups and industry experts, and has been fully funded by Bristol Myers Squibb (primary sponsor) and MSD (supporting sponsor). The initiative brings together a collaborative Working Group of healthcare charities and patient groups to identify the current inefficiencies in cancer care and develop evidence-based, best practice solutions that put the patient first. Together, the Working Group collectively advocate for the implementation of best practice services by Government and NHS system leaders.

Smart Patients

Smart Patients is an online community for patients and their families.

They believe patients are the most under utilised resource in healthcare. They have watched patients become experts in their conditions — and they see that their knowledge improves the care they receive. With the right tools, other patients can do the same.

Patients often become extraordinarily knowledgeable about their disease. You can, too.

Experimental Cancer Medicine Team (ECMT)

The digital Experimental Cancer Medicine Team (ECMT) is a clinical digital research group. They bring researchers, clinicians, technology and patients together to innovate in early clinical trials. Their aim is for patients, carers and families to work in partnership with researchers on clinical trials and new technologies.

The digital ECMT forms part of the Manchester Centre for Cancer Biomarker Sciences, based within the Cancer Research UK (CRUK) Manchester Institute, which is part of The University of Manchester. We are also aligned to the Experimental Cancer Medicine Team in The Christie NHS Foundation Trust. This makes the digital ECMT ideally placed to work directly with patients in the development of new ways of monitoring clinical trials and real-time collection of patient data.

Coalition for Reducing Bureaucracy in Clinical Trials

In September 2020 a broad cross-disciplinary coalition of medical societies and patient advocates issued the joint statement ‘Reducing bureaucracy in clinical trials: now is the time!’. The statement calls for urgent action to make clinical trials less bureaucratic and more patient-centred, efficient and cheaper. At stake are the quality of clinical trials, access to innovative treatments and, crucially, patient safety. The Coalition calls on regulators, policymakers, sponsors, ethics committees and other stakeholders to collaborate to ensure that regulatory guidelines, safety reporting requirements and informed consent procedures do not harm what they are meant to protect: clinical trial quality and patient safety.

VOCAL at Manchester University NHS Trust

Vocal brings together people from all walks of life, with all kinds of experiences, and connects them with health research to push the boundaries of what research can achieve, now and in the future. The opinions and lived experiences of patients, carers or anyone who is interested in having their say are vital to their work. They support these people to get involved in research leading to better diagnoses, treatments and care. They also connect researchers with patients, families and communities – enabling the people’s voices and lived experiences at the heart of research. Vocal is a not for profit organisation hosted by Manchester University NHS Foundation Trust in partnership with The University of Manchester. They aim to collectively address health inequalities in research in Greater Manchester.

Access to Cancer Medicines Coalition (ACMC)

We believe in enabling patient access to the most innovative and effective medicines for their cancer. As such, we are members of the Access to Cancer Medicines Coalition (ACMC), a coalition of 24 cancer charities and patient groups working to ensure cancer patients have timely access to the most clinically effective medicines for their condition on the NHS. In addition to our work with the National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Coalition (SMC) on health technology appraisals for new medicines, membership of the ACMC enables us to influence policy decisions that affect access to cancer medicines.

Paul Popham Fund, Renal Support Wales

The Paul Popham Fund was set-up and is run by close friends and family of the late and very much-respected Paul ‘Wally’ Popham. Everyone involved in The Fund has been inspired in some way by Paul Popham’s unrelenting optimism in the face of renal disease. The aim of the Paul Popham Fund, Renal Support Wales is to improve the quality of life of renal patients in Wales. Achieved by working with units and centres that treat and specialise in renal care in Wales to purchase items that will directly benefit the renal patient’s quality of life. This aim will also be achieved by working with and developing initiatives that will help improve the renal patient’s health, wellbeing and welfare.

Wilms Cancer Foundation

The Wilms Cancer Foundation (WCF), is a charitable organisation that supports and represents the needs of children, families and healthcare organisations affected by childhood kidney cancer internationally. Their mission is to establish an international programme of awareness, education, advocacy, early detection and treatment to tackle the spread of childhood kidney cancer. They also support children, families and organisations as they tackle cancer on a daily basis, through initiatives such as the ‘Dream-Making’ programme, in order to lighten the emotional and financial burden they face.

Independent Cancer Patients’ Voice (ICPV)

Independent Cancer Patients’ Voice (ICPV) is a patient advocate group independent of established UK cancer charities and aware of the value of medical research to both public health and to the national economy. Their aim is to improve existing treatments for every cancer patient and develop new treatments by bringing the patients’ voice into clinical research by; (1) educating, supporting and mentoring patients so that they can have an equal voice with clinicians and researchers and (2) bringing the patients’ voice to clinicians and researchers by being patient advocates in clinical research. Both Rose Woodward and Julia Black are members of the ICPV.

HLRCC Foundation

Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) or Reed’s Syndrome is one of several rare familial syndromes involving kidney cancer. The HLRCC Foundation’s mission is to provide up-to-date information on the disease to patients and their families and also to clinicians as because of its rarity most people are unaware of its existence including clinicians.

VHL UK/Ireland

VHL UK/Ireland relieves the charitable needs of people with von Hippel-Lindau syndrome (VHL) and similar genetic conditions, such as Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) and Birt-Hogg-Dubé Syndrome (BHD), including their families and carers in the UK and Ireland. They provide support and advice regarding these genetic conditions; provide funds for research into the genetic conditions and for equipment to assist with such research; and educate the public in all matters concerning these genetic conditions.

The Ricky Casey Trust

The Ricky Casey Trust seeks to advance the knowledge, education and research into rare renal cancers in the UK, particularly but not exclusively the renal medullary carcinoma (RMC) subtype. We aim to raise funds to improve awareness amongst the general public and healthcare professionals treating renal cancers in the UK, fund vital research, and provide equipment and treatment to help relieve sickness and preserve the health of people suffering from RMC and other rare renal cancers.

Fight Bladder Cancer

Fight Bladder Cancer is the only UK-based bladder cancer charity founded and run by bladder cancer survivors and their families, so they know exactly what you’re going through. They explain the medical jargon, give you the facts and figures, share tips and tell stories. They support all people affected by bladder cancer, help to raise awareness, support medical research and campaign to affect policy at the highest levels to bring about change in bladder cancer treatment. Their aim is to achieve better outcomes and quality of life for all those affected.

Macmillan Cancer Support

Macmillan provide support and help you take back some control in your life. From help with money worries and advice about work, to someone who’ll listen if you just want to talk. Right from the moment you’re diagnosed, through your treatment and beyond, Macmillan are a source of support, giving you the energy and inspiration to help you feel more like yourself. Macmillan’s ambition is to reach and improve the lives of everyone living with cancer and to inspire millions of others to do the same.

National Cancer Research Institute (NCRI) Bladder and Renal Clinical Studies Group (CSG)

The National Cancer Research Institute (NCRI) is a partnership of UK cancer research funders. Our Partners have funded nearly £10 billion of cancer research since 2002, and working together ensures that these funds are used to best effect. The NCRI Clinical Studies Groups (CSGs) have been in existence for more than ten years, and are a central part of the UK’s cancer research infrastructure. There are 17 CSGs that bring together clinicians, scientists, statisticians and lay representatives to coordinate development of a strategic portfolio of trials within their field. All CSGs interact with clinical research networks, funders and researchers to develop studies aimed at improving outcomes for patients.

Association of the British Pharmaceutical Industry (ABPI) Patient Organisation Forum

The ABPI wants to support relationships across the research sector, between industry, charities, funders, researchers, patients and the public. The ABPI Patient Organisation Forum meets quarterly and provides a forum for Government and healthcare stakeholders to engage both charities, patient organisations and industry in developing policy. This forum is open to ABPI member companies and to registered charitable patient organisations only. The ABPI also partners with the Association of Medical Research Charities (AMRC) and National Institute for Health Research (NIHR) to share learnings and identify challenges in embedding patient and public involvement in research.

Patient Involved in NICE (PIN)

National Institute for Health and Care Excellence (NICE) public involvement work is underpinned by the people who use NHS services, carers, the public, and voluntary and community sector organisations. NICE supports the involvement of these people and patient organisations to be able to help develop NICE guidance and support putting them into practice. NICE guidance and other products are focused around the people for whom they are most relevant and most directly affected by their recommendations. We represent kidney cancer patients in the development of NICE guidance and health technology appraisals through our involvement with the Patients Involved in NICE (PIN) coalition.

Scottish Medicines Consortium (SMC) Patient Involvement Network

The Scottish Medicines Consortium (SMC) is the national source of advice on the clinical and cost-effectiveness of all new medicines for NHSScotland. Their aim is to ensure that people in Scotland have timely access to medicines that provide most benefit based on best available evidence. The SMC is a committee of clinicians, pharmacists, NHS representatives, the pharmaceutical industry and the public. The committee considers a broad range of evidence to fully understand the experiences of patients, their families and carers and how a new medicine impacts the quality of life of patients and carers. This enables them to make a fully informed decision on whether or not to recommend a new medicine. Patients, families and carers provide unique knowledge about what it’s like to live with a condition. We work in partnership with the SMC to explain advantages and disadvantages of medicines that may not be available in published literature or quality of life measures.

The Scottish Cancer Coalition

The Scottish Cancer Coalition (SCC) was created in 2003 as a partnership of voluntary organisations dedicated to improving cancer services and outcomes for patients in Scotland, and promoting research and prevention efforts. Our current membership stands at 30 third sector organisations who operate in Scotland, including Action Kidney Cancer. They are all aligned with providing services to people with cancer and their families. The Coalition exists to ensure the needs of people living with or affected by cancer in Scotland are met. Member organisations have a complimentary range of expertise and experiences representing a wide-range of cancers and have a shared vision for collective action to make a difference and improve outcomes for cancer patients in Scotland.

Welsh Cancer Alliance

The Wales Cancer Alliance (WCA) is a coalition of charities working to prevent cancer, improve care, fund research and influence policy in Wales. They work closely together to provide advice and support for people affected by cancer and their loved ones. They promote the best cancer prevention, treatment, research and care for people in Wales. Every year the organisations invest more than £20m in Wales and contribute to the development of cancer policy.

The alliance believes that people affected by cancer and their carers should be at the heart of co-creating new services and cancer policy. The third sector has an important role to play in developing, reshaping and delivering improvements in cancer care. They do this by working in partnership with the Welsh Government, the NHS, local government and other stakeholders.

Greater Manchester Cancer Alliance

The Great Manchester Cancer Alliance aims to improve the lives of people affected by cancer in Greater Manchester. They are one of 21 Cancer Alliances across NHS England. They want more people than ever to reduce their risk of developing cancer. For people who go on to develop cancer, they want to improve their survival outcomes and experiences.

They work in collaboration with organisations across the region to help people get diagnosed earlier, provide better treatment and support people to live well with and beyond cancer.


Every day in the UK, 38 young people are diagnosed with cancer. Trekstock aim to ensure that every young adult in their 20s or 30s living with cancer and its after-effects gets the tailored support they’re looking for. They are the only charity in the UK to provide wellbeing support services for those in their 20s or 30s diagnosed with, living with and surviving any type of cancer. They organise events, specialist programmes, resources and an online forum, designed specifically  to meet the needs of their community, whatever stage they are at in living with cancer.

Our funding supporters

We work with corporate sponsors on various projects to help improve the lives of kidney cancer patients and their families. As a corporate sponsor, your help is vital to us being able to provide our support services and to:

  • Improve awareness of kidney cancer and treatment
  • Provide personal and practical support to patients and their families
  • Enable access to innovative new treatments
  • Help empower patients to make decisions about their own healthcare
  • Contribute to kidney cancer research projects.

Our corporate sponsors help to make these projects possible to improve the treatment and care of kidney cancer patients in the UK.

We also receive grants from funding partners and foundations for specific project work directed at improving the lives of kidney cancer patients and their families.

The benefits of working with us

Our vision is to improve the lives of kidney cancer patients and their families, by providing personal and practical support to help bridge the gap between the hospital team and the day-to-day reality of coping with a diagnosis of kidney cancer. Through a charity partnership, your company can be part of our vision.

By working with Action Kidney Cancer your company will support our work as the UK’s largest patient-led charity. With your support, we can improve awareness of kidney cancer and access to treatments, provide up-to-date and relevant information, provide personal and practical support to the kidney cancer community, and empower patients to make decisions about their own healthcare. We can improve awareness of clinical trials, provide real world data for health technology appraisals, and contribute the patient voice for clinical trial design and strategy. We will help you to deliver on your business objectives, while inspiring your staff as your company helps us change lives.

A partnership with us can help you:

  • Fulfil your corporate social responsibility objectives
  • Improve awareness of kidney cancer and treatments
  • Provide patient input to improve clinical trial design and strategy
  • Provide real world evidence for health technology appraisals.

We would like to thank the following corporate sponsors and funding partners, without whom we would not be able to work on behalf of the kidney cancer community to support patients and their families: