About us
Who we are, what we do and what drives our work
Neuroendocrine Cancer UK is a patient co-founded charity dedicated to supporting people affected by neuroendocrine cancer and building a community where no one feels alone.
We provide trusted information and support, ensure the experiences of people affected by neuroendocrine cancer are heard, and work to improve care, understanding and research.
We support people living with neuroendocrine cancer, as well as their families, carers and loved ones.
What we do
We work to improve the lives of people affected by neuroendocrine cancer by:
- Providing information, education and practical support for patients, carers, families and healthcare professionals.
- Raising awareness among the public, healthcare professionals and policymakers.
- Ensuring patient experiences influence care, research and policy.
- Collaborating with healthcare providers and our partners to advance understanding and treatment.
- Funding research to improve diagnosis, treatment and care.
Our impact
Between 2020 and 2025, we expanded our support, information and research activities for people affected by neuroendocrine cancer.
Read our 2020–2025 impact report
Our strategy
As we look ahead, our mission, vision and values guide our work and the priorities set out in our 2025–2030 strategy.
Our mission
To support and inform patients and families from diagnosis, enable access to the best care and treatment, advance neuroendocrine cancer research, increase national awareness, and influence improvements in outcomes.
Our vision
A world in which people know how to recognise, diagnose, treat, care for, and cure patients with neuroendocrine cancer.
Our values
Equity: We champion equal care for all neuroendocrine cancer patients in the UK.
Excellence: We strive for excellence across our support, care, treatment, and research.
Collaboration: We collaborate with our colleagues, community and partners to build an accessible, approachable community.
Honesty, transparency and integrity: We act with integrity and promote openness, honesty and transparency to build confidence and trust in our organisation.
Our priorities for 2025–2030
- Continue to provide support and care for our community
- Increase awareness of neuroendocrine cancer and educate a wider audience
- Increase investment in research and innovation
- Increase income and organisational sustainability
Our story
Neuroendocrine Cancer UK was founded in 2001 by a small group of patients, families and healthcare professionals to support people affected by neuroendocrine cancer, raise awareness and drive research.
They saw firsthand how this often misdiagnosed cancer left people feeling isolated and unsure of where to turn. They galvanised support through their shared experiences, frustrations, hopes and determination.
What started around kitchen tables has grown into a national charity that advocates for patients and their families across the UK. Along the way, we have built a community where people affected by neuroendocrine cancer can find information, support and a sense of belonging. We have supported research, developed educational programmes for healthcare professionals, and advocated for earlier diagnosis and better treatment.
While we are proud of these achievements, we have some way to go to achieve our goals. That is why we will continue to work with our community, healthcare professionals and other partners to drive improvements and bring about lasting change.
NET Patient Foundation
We evolved into the NET Patient Foundation. providing resources, support, and advocacy for individuals living with neuroendocrine tumours (NETs) across the UK.
Integration with The Ann Edgar Charitable Trust
We incorporated The Ann Edgar Charitable Trust, which supported neuroendocrine cancer groups in Scotland for over a decade, enhancing our reach and resources in the country.
Our thanks to Peter Gwilliam, Liddy Oldroyd, Andy Geach and Cathy Kalamis for all of their inspiration and hard work in helping to set up Neuroendocrine Cancer UK.
Our team
We are supported by a dedicated team of staff, trustees and our patron, alongside a wider community of people with lived experience, healthcare professionals and organisations who share our commitment to improving the lives of people affected by neuroendocrine cancer.
Together, they bring a wealth of experience, expertise and different perspectives to our work, helping us provide information and support, raise awareness and work towards better care and outcomes.
Accounts and annual reports
Transparency and accountability are at the heart of everything we do. Here you can view our recent annual reports and accounts to see how we use our funds to support people affected by neuroendocrine cancer.