Patient organisation partners

Patients are the at the heart of everything we do. We were joined by a number of patient charity organisations.

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Asthma + Lung UK

At Asthma + Lung UK, we believe that every breath matters - and that the right to breathe freely applies to everybody, regardless of income, age, ethnicity, gender, or background.

Beacon for Rare Diseases

Beacon is a UK-based non-profit organisation that is building a united rare disease community with patient groups at its heart. Our patient group trainings help these often small and voluntary organisations to form, grow, and professionalise. It is through our events and trainings that patient groups have the opportunity to connect and collaborate with others across the rare disease space. At Beacon, we believe that no one should face their rare journey alone.

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Cambridge Rare Disease Network

Cambridge Rare Disease Network is a platform for change. It is the infrastructure that unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare diseases. By sharing knowledge and experience, and working together, the journey towards better diagnosis, treatment and support for patients and their families is smoother and more certain.

Cancer 52

Cancer52 represents over 100 predominantly small patient support group cancer charities united by their vision of seeing a better future for everyone affected by the rare and less common cancers, which account for more than half of all cancer deaths in the UK.

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CLL Support

Our mission is to support and empower Chronic Lymphocytic Leukaemia (CLL) patients, and Small Lymphocytic Leukaemia (SLL) patients, their families and supporters through education and access to reliable, relevant and current information.

Crohn’s and Colitis UK

Every day, people are diagnosed with Crohn's or Colitis, the two main forms of inflammatory bowel disease. You could be any age, rich or poor, of any faith or none, of any ethnicity, sexuality, or gender. You could be anyone walking down any UK street. Whoever you are, a diagnosis of Crohn's or Colitis will be life changing.

Since 1979, Crohn's & Colitis UK has been here for everyone affected by Crohn's and Colitis.

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Duchenne UK

We are the UK's leading Duchenne muscular dystrophy (DMD) charity. We're connecting scientists, industry, the NHS and families to accelerate research and bring the best care and treatments to everyone affected by DMD.

Gene People

Gene People, previously known as Genetic Disorders UK, is a registered charity with a vision to improve the lives of individuals and families affected by genetic conditions.

Our mission is to be the leading source of information and support for both those affected by a genetic condition, and the charities and patient groups that support them, by bringing together everyone’s combined experience in a place it can be shared.

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Kidney Research UK

As the leading kidney research charity in the UK, nothing is going to stop us in our urgent mission to end kidney disease. We’re here to be heard, to make a difference, to change the future. This is a disease that ruins and destroys lives. It must be stopped.

Meningitis Now

Meningitis Now is the first meningitis patient group in the world, founders of the meningitis movement and the only charity dedicated to fighting meningitis in the UK. Over our 30 year history, we have invested over £12m in early stage research that has played a critical part in the introduction of five life-saving vaccines. 

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National Cancer Research Institute

We help deliver better outcomes for all those affected by cancer throughout the UK and beyond. Identifying gaps in cancer research and addressing them. Looking out for unnecessary, expensive duplication of effort and guarding against it. We tirelessly search for new ways and means to accelerate the progress of cancer research.

Oracle Cancer Trust

Oracle Cancer Trust is the UK's leading national charity dedicated to head and neck cancer.

Since the early 90's, cases of head and neck cancer have increased by 35% in the UK and is now the fourth most common cancer type in men.

The good news is that an estimated 88% of head and neck cancers are preventable in the UK.

Oracle Cancer Trust support programmes and fund research at some of the UK’s leading scientific research institutions including The Institute of Cancer Research, Bart’s/Queen Mary’s University, Newcastle University, The Royal Marsden Hospital, Brunel University and The University of Sunderland.

Oracle is also actively engaging with key Head and Neck multi-disciplinary teams across the UK to understand how best to tackle the issues of inequality and there are some very high impact tangible projects that are simply not happening due to lack of funding.

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Prostate Cancer Research

Prostate Cancer Research are determined to provide a better future for men and their families. They fund world-class scientists and their pioneering research into prostate cancer, working towards new breakthrough treatments.

Society for Mucopolysaccharide Diseases

The MPS Society provides support to families affected by one of 25 rare, life limiting genetic conditions. They want all affected children and adults to know where to turn for specialist knowledge, support and advice.

Founded in 1982, they are the only registered charity in the UK which focuses on MPS (Mucopolysaccharide), Fabry and related lysosomal diseases. These diseases cause a range of progressive disabilities. 

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The Cystic Fibrosis Trust

Cystic Fibrosis Trust is the charity uniting people to stop cystic fibrosis (CF). They fund vital research, improve care, speak out and race towards effective treatments for all. They won't stop until everyone with cystic fibrosis can live without limits.

The Motor Neurone Disease Association

The MND Association fund research, improve care and provide support for people with MND, their families and carers

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Last modified: 29 November 2023

Last reviewed: 29 November 2023