About Neuroendocrine Cancer UK
A diagnosis of cancer is one of the greatest challenges anyone can face. Being diagnosed with a rare or uncommon cancer can have additional consequences, not least in terms of awareness, early diagnosis and access to expertise. Feelings of isolation, fear, uncertainty and anxiety are not uncommon.
Neuroendocrine Cancer UK exists to address the unmet needs voiced by the Neuroendocrine Cancer community, and to support patients and their loved ones with the physical and psychological burden of Neuroendocrine cancers.
Our vision is of a world in which people know how to recognise, diagnose, treat, care for, and ultimately cure patients with Neuroendocrine Cancer.
Our purpose is to support and inform patients and families from diagnosis, enabling access to the best care and treatment whilst stimulating Neuroendocrine Cancer research, increasing national awareness and influencing improvements in outcomes.
- Equality of care for all Neuroendocrine Cancer patients in the UK
- Excellence in support, care, treatment and research
- Fair allocation of national resources and inclusion in national policies and strategies for all cancer types
- Collaborative working and building an accessible, approachable fraternity
- Honesty, transparency and integrity to promote confidence and trust in the charity.
Anyone affected by Neuroendocrine Cancer.
We do this by:
We support all those affected by Neuroendocrine Cancer through our support and information work, we influence infrastructure and optimal care through our advocacy and policy work, and address public perceptions of Neuroendocrine Cancer (NC) through our education and awareness work.
- Act as a bridge between hospital and home
- Represent the voice of our community
- Build a collaborative community of people, knowledge, and expertise
- Support people affected by NC
- Strive to improve the patient pathway.
Our key activities include
CEO & Co-founder
Management, Fundraising and Advocacy
I am the CEO and co-founder of NCUK, and my overarching role is to remain the driving force behind the organisation that I extremely passionate about, and to ensure all staff, collaborators, and contractors focus on the purpose of the NCUK as part of everything they do.
Charities have a huge responsibility to utilise donations in the right way, in a way that benefits the community that they serve. One of my other key roles is to keep a focused approach to our work, remembering daily our vision, our mission, and our values.
Patient Engagement, Education & Policy Lead
Management, Support and Advocacy
My role involves; working with members of the Neuroendocrine Cancer community, to provide information, education and support. To which end I am responsible for the provision, maintenance and sustainability of our support services: Helpline, Natters, Online forums and Patient Resources content.
I also am responsible for leading the organisation’s education and policy work, including; HCP educational resources and working with regulatory, health service and other agencies, including NICE and NHS bodies, representing, and supporting representatives of, the Neuroendocrine Cancer community.
Operations Manager & Digital Lead
Management & Comms
I am responsible for developing and delivering the marketing and communications strategy and managing the organisation’s marketing and communications activities.
As Digital Lead, I manage the website, design patient literature and create content such as videos and podcasts.
I am the key support for the CEO and manage the smooth running of all the organisation’s operations. I am the primary contact for our fantastic fundraisers and the main point of contact for the office email. I manage our yearly fundraising campaigns.
Contact: Monday – Thursday 9:00am – 3:00pm 01926 883 487 | firstname.lastname@example.org
Fun fact about me! When I’m not climbing mountains, I’m dancing!
Campaign & Comms
My role entails working on specific campaigns to bring about tangible and positive change to the lives of people with Neuroendocrine Cancer (NC). Our campaigns include ‘Spotlight on Neuroendocrine Cancer,’ which raises awareness of NC among Healthcare professionals and ‘Advancing Neuroendocrine Cancer Research’ which aims to fund more research into the disease.
Contact: Monday – Wednesday 9:00am – 3:00pm email@example.com
Cancer Support Co-ordinator
Support & Comms
I facilitate and coordinate our UK Patient Support ‘Natter’ meetings, with my colleague, Nikie Jervis; including sourcing and booking medical Guest Speakers. I also manage our MedTwitter and LinkedIn social media accounts, and monitor and respond to our confidential Facebook Patient support groups.
I’m a Research Advocate for INCA (International Neuroendocrine Cancer Alliance), contributing to representing the patient voice – and I sit on the Trial Steering Committee for the NET-02 Clinical Trial.
Contact: Tuesday – Thursday 10:00am – 4:00pm – 0800 434 6476 | firstname.lastname@example.org
Fun fact about me! Known to dance on a few table tops – but when more sensible, am a pretty tenacious chess player!
Marketing & Communications Officer
I am responsible for creating and sharing regular e-bulletins and a monthly newsletter. I share regular messaging across social media and assist in engaging in wider community initiatives via social media and online.
Contact: Monday – Wednesday 9:00am – 3:00pm email@example.com
Fun fact about me! I was once on tv programme Location, Location, Location!
I am the organisation’s Salesforce Administrator supporting the team, managing data, maintaining security standards, and delivering actionable analytics. I am also the event’s administrator responsible for organising meetings and education events.
Fun fact about me! I’ve been married 3 times….to the same person.
I am the main point of contact via phone in the office. My duties involve processing the charity’s donations, dispatching patient, hospital and fundraiser orders and providing administrative support for the team.
Contact: Monday – Thursday 9:00am – 2:45pm 01926 883 487 | firstname.lastname@example.org
Fun fact about me! I like to walk miles daily and am obsessed with the sunrise and sunset.
Neuroendocrine Cancer Support Nurse
Some of you may already know Olivia, as she is currently a Clinical Nurse Specialist at The Beatson West of Scotland Cancer Centre. Olivia will be supporting our dedicated Neuroendocrine Cancer helpline.
Prof. Martyn Caplin
Prof. Martyn Caplin is a consultant in gastroenterology and hepatobiliary medicine at the Royal Free Hospital in London. In addition to his general practice in gastroenterology he is lead physician for the Neuroendocrine Tumour Unit at the Royal Free, leading a multidisciplinary clinical team as well as heading a research programme in neuroendocrine tumours. His research interests include gastrointestinal peptides, new targets for neuroendocrine tumour therapy, assessing the efficacy of targeted isotope therapy for neuroendocrine tumours and other interventional protocols.
“It is a great pleasure and honor to continue being a patron of the Neuroendocrine Cancer UK. I recall when we first set up ‘Living with Carcinoid’ in 2000 at the Royal Free Hospital and the team have done an amazing job in developing and establishing the Neuroendocrine Cancer UK as not only the premier NCUK support group but also an internationally respected and high profile group.
Neuroendocrine Cancer UK is not just about support and information which is so important especially for rare cancers but also ‘patient empowerment’ so that NCUK patients can have what is rightfully due to them. Thus the importance of Neuroendocrine Cancer UK in campaigning for PRRT, liaising with NICE etc and being a political voice to raise the profile of NETs and pressure the NHS for appropriate recognition for NCUK patients.
The Neuroendocrine Cancer UK does fantastic work in collaborating with NCUK specialists and UKI NETs as well as having a strong voice in Europe within ENETS and European Reference Network for Rare Cancers. Another true success has been the research programme and funding inspired by Neuroendocrine Cancer UK and the research grants it has developed.
I hope to continue to promote and help the Neuroendocrine Cancer UK both nationally and internationally so that the voice of the NCUK patient is heard loudly and clearly.”
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.
- Peter Gwilliam (Chairman)
- David Bartlett
- Emma Brown
- John Kent
- Dr Rajaventhan Srirajaskanthan
- Tom Jackson
Multidisciplinary Expert Advisory Board
The Rareminds counsellors offer support during tough times or in making sense of present difficulties that may stem from past experiences. In so doing, it can often be possible to find ways to understand and manage complicated feelings or situations differently. They can also help you with strategies and techniques for managing particular issues, such as panic attacks, fatigue, and anxiety around scans/treatments.
The History of Neuroendocrine cancer UK
In 2020, Neuroendocrine Cancer UK (formerly known as NET Patient Foundation) rebranded. We changed our name to reflect our community better, building on the foundation we have laid down over the last 17 years (2002 – Living with carcinoid, 2006 – NET Patient Foundation, 2020 – Neuroendocrine Cancer UK). We want to reduce confusion and increase awareness of this cancer type, and by giving us a more focused and explanatory name, we can better serve our community.
In January 2023, we integrated with The Ann Edgar Charitable Trust. The Ann Edgar Charitable Trust has operated for 11 years, running Neuroendocrine Cancer Natter support groups in Scotland.
Why do we have a Moth on our logo?
In medicine, the term “zebra” is used in reference to a rare disease or condition. “If you hear hooves, you assume horse.” The rare disease community wants you to consider zebra. We agree with and advocate this message. However due to the rise in incidence of Neuroendocrine Cancer, it is now less likely to be considered rare.
We have purposely chosen to use the moth as a symbol of our identity as it is often mistaken for a butterfly, or vice versa. People see a pleasant looking or ‘good moth’ and assume butterfly, on closer inspection it is shown to be a moth. People often assume that Neuroendocrine is one of the ‘good cancers’ – we know this not to be true. We ask that you consider the power of an assumption, and always take a closer look.
Who else we work with
Want to work with us? Please, get in touch!