April 2025, Edition 4
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April 2025 | Newsletter No.4 | #ncukintheloop
PATIENT STORY
Coming to Terms with Tumours, by Angela
Neuroendocrine Cancer Site: Ileum
"One has just to listen to one’s body, ‘go with the flow’ and adjust one’s expectations accordingly for a better quality of life."
NEUROENDOCRINE CANCER UK IN THE NEWS
Catherine Bouvier, CEO of Neuroendocrine Cancer UK, voices her support for the Daily Express Cancer Care Mental Health campaign, highlighting key insights from our Open Conversations report.
Neil Dickson also shares his personal story of being diagnosed with neuroendocrine cancer—and the critical gap in mental health support he encountered.
NEUROENDOCRINE LIFE ALLIANCE
The Neuroendocrine Life Alliance is a new long-term partnership between Neuroendocrine Cancer UK and AMEND. It aims to tackle key issues faced by patients with neuroendocrine diseases.
Launching 28th April!
Click below to watch
WEBINAR
Neuroendocrine cancer - Specialist Care Webinar:
- What is specialist care?
- Do I need to be seen at an ENETs centre?
- Why is it important in neuroendocrine cancer?
- What are ENETs centres?
COMING SOON
May's Webinar:
Thursday 15th May - Pancreatic NETs, Surgeries (inc. Whipple), Blood Sugars, Treatments.
CAKES FOR A CAUSE
We’re almost at the end of April, but there’s still time to get involved!
Host at home, organise something at work, or get the kids and grandkids involved!
It’s simple: Sign up, download your free fundraising pack, and choose your date to bake a difference!
OUR INCREDIBLE FUNDRAISERS!
We would like to share with you, 3 fundraisers who recently supported Neuroendocrine Cancer UK by taking part in the Brighton Marathon on 06th April.
Firstly, Sharon Henville and her daughter Taylor running in memory of their brother / uncle, Jeff who sadly passed away from neuroendocrine cancer in 2018. Sharon said this about her motivation to support us:
“In a moment of madness when my daughter was running last year's London Marathon, I decided I wanted to try running a marathon. So, I agreed to run Brighton Marathon with my daughter as her Guide Runner. As most of you know the only thing I run up to is a buffet table, however, I have been training with Taylor since November, and we will be running together on the 6th of April for the charity Neuroendocrine Cancer UK.”
They both completed the marathon and raised an amazing £684.25! Thank you so much, Sharon and Taylor!
Next up, we'd like to thank Ben Clarke for running in support of his mother, who was diagnosed with a malignant paraganglioma, a rare form of neuroendocrine cancer.
Ben said: “Watching her fight this relentless disease has been both heart-wrenching and inspiring. Her strength and determination motivated me to take action and support others who are battling similar challenges.”
He took on the challenge with the support of his friends and family, completing the marathon and raising an amazing £5064.75!
Thank you so much, Ben!
A HUGE THANKS
Sharon, Taylor, and Ben are just a few of the many amazing fundraisers in our vibrant community. While we love to shine a spotlight on individual fundraising achievements, we want to extend our heartfelt thanks to everyone who supports Neuroendocrine Cancer UK. Your dedication, passion, and creativity make an incredible difference.
Did you know there are so many ways to get involved? Whether you're baking sweet treats for Cakes for a Cause, taking the plunge with a skydive, or challenging yourself with a marathon, there’s a fundraising activity to suit everyone.
Visit our fundraising page below to explore the possibilities and start planning your next adventure today!
ADVOCACY AND POLICY
Neuroendocrine Cancer UK began as a small community initiative and has grown into a leading charity supporting those affected by neuroendocrine cancer.
The organisation focuses on support, awareness, and research, while advocating for early involvement of the community in decisions around healthcare, research, and policy. We emphasise the importance of including patient voices to ensure decisions reflect real needs, and invite continued support to share and expand on our ongoing work.
Click below for the latest updates on SIRT, PERT, NICE, Rare Cancer Bill, and much more.
YOUR SUPPORT DRIVES NEUROENDOCRINE CANCER RESEARCH
Research is key to better understanding and managing disease. Through our Advancing Research campaign, we’re proud to be making a real impact in neuroendocrine cancer research. Your generous support helps us fund vital work that benefits people living with NC today and in the future. Thank you for making this possible!
At the end of last year we funded the following 2 projects which are designed to improve outcomes for patients with neuroendocrine cancer.
- Role of Tumour Microenvironment in SI-NETs: full characterisation of an innovative human-derived 3D ECM SI-NET model and proof of concept study. Prof Krista Rombouts, Royal Free Hospital, London
- Feasibility of cell-free DNA methylation profiling for minimally invasive cancer detection and classification in patients with well-differentiated neuroendocrine tumours. Dr Melissa Frizziero, The Christie NHS Foundation Trust, Manchester
HELP US RAISE AWARENESS
Our Spotlight on Neuroendocrine Cancer campaign is focused on increasing awareness of NC among non-specialist healthcare professionals. We’ve created bite-sized educational overviews tailored to different HCP disciplines, along with patient case study videos to highlight real experiences.
Many HCPs haven’t received formal training on NC—your support can help change that.
Please share our HCP resources page with your medical team to help us spread the word and improve early recognition and support for patients.
Help Us Reach More Patients
We're connecting with hospitals to raise awareness of our services and ensure more patients get the support they need.
We'd love to hear from you if you can help by sharing our information with your hospital team.
Click the button below for more info and to volunteer!
We are delighted to share with you that we will be hosting a Patient Education Event in Glasgow this November!
More details to follow soon!
We attend educational conferences to represent our community and stay up to date on medical advances, research, and clinical trial opportunities in neuroendocrine cancer.
Cathy, Nikie, and Olivia represented Neuroendocrine Cancer UK at the 2025 ENETS Conference
Cathy attended ESMO and ran a powerful session on age and equality in rare cancer care, sharing cross-country insights on the NEN patient journey across Europe.
Nikie and Kate hosted a stand at the Society for Endocrinology Conference
Big congratulations to our Director of Support Services including Education & Policy NMC registered nurse, Nikie, who won Best Nursing Practice Abstract at this year’s Society for Endocrinology Conference, where she and Kate also hosted a stand!
And well done to our Marketing & Digital Coordinator, Beth who had a poster exhibited on our Online Virtual Handbook, showcasing how we're making vital information more accessible to patients wherever they are.
YOUR FEEDBACK PLEASE
Since this is a new format for our newsletter, we’d love to hear your thoughts. Please take a moment to answer a few quick questions and let us know how we’re doing!
Thank you, Neuroendocrine Cancer UK.
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We look forward to seeing you next month and keeping you in the loop!
Neuroendocrine Cancer UK
Neuroendocrine Cancer UK is a patient co-founded
organisation dedicated to supporting those affected by
neuroendocrine cancer. We receive no government
funding, NHS funding or grants from the larger cancer
charities. We are solely reliant on the generosity of
members of our community to fund our ongoing work, to
whom we are so grateful.
