No images? Click here
November 2025 | Newsletter No.11 | #ncukintheloop
WORLD NEUROENDOCRINE CANCER DAY – A RECORD-BREAKING MOMENT FOR AWARENESS
This World Neuroendocrine Cancer Day (10th November) was our most impactful yet - and it’s all thanks to you.
Thanks to everyone who liked, shared and engaged with our content, and to everyone who bravely shared their own story, our awareness reach has now surpassed 500,000 people. This is a record-breaking milestone for Neuroendocrine Cancer UK, and it simply wouldn’t have been possible without our incredible community amplifying the message.
We would also like to extend a heartfelt thank you to everyone who donated on the day - together you raised £2,000 to support our services. And thank you to those who ordered GP awareness cards; each one helps us bring earlier recognition and diagnosis one step closer.
While the 10th November marks World Neuroendocrine Cancer Day, for those living with this disease - and their loved ones - every day is Neuroendocrine Cancer Day. Although we wish a day like this didn’t need to exist, your continued support, voice, and advocacy are helping create a future where neuroendocrine cancer is recognised sooner, understood better and treated earlier.
Thank you for standing with us on the 10th, and every day.
PATIENT STORY
Mastering Taekwondo and Cancer, by Leanne
Neuroendocrine Cancer Site Rectum with mets to liver and bones.
"I took up Taekwondo 13 years ago, just wanting to get fit and lose some weight following a nasty car accident. I have to thank Taekwondo for saving my life, really, as losing weight then highlighted I had an issue with my liver as it began to protrude and become painful during training sessions. Otherwise, I would probably have never known I had any issues."
"Having to adapt my training in Taekwondo, a sport I loved from the start, due to treatments, surgeries, recovery, sepsis, and pneumonia, to name just a few, just seemed to motivate me to try harder."
DECEMBER'S WEBINAR: Diet & Nutrition: Hold all the Trimmings
SPEAKERS: James Wimbury, Advanced Specialist Diabetes Dietician
WHEN: Date: 11th December 2025 | Time: 6.00 - 7.30pm
A little reminder that we regularly host educational webinars designed especially for our patient community.
If you’ve missed any sessions — or would like to revisit a topic — you can catch up anytime.
All previous webinars are available to watch on demand.
They're free, easy to access, and full of practical information, expert insight, and lived experiences.
PATIENT SUPPORT GROUPS
Every week we offer a variety of support groups designed to meet the diverse needs of our community. With sessions led by caring staff or community facilitators, you’ll find a safe space to share stories, gain insights, and grow stronger together.
Click button below to view dates and locations for upcoming Patient Support Groups.
SHEFFIELD NET CENTRE OF EXCELLENCE GEDNEN (Group Education for nutritional and dietary advice and symptom management in Neuroendocrine Neoplasms) COURSE
Sheffield NET Centre of Excellence held their first Group Education for nutritional and dietary advice and symptom management in Neuroendocrine Neoplasms (NEN) this month - known as the GEDNEN course.
NEUROENDOCRINE CANCER UK HERO AWARDS
A heartfelt thank you to everyone who submitted nominations and shared such powerful, inspiring stories. And thank you to all who took the time to review our finalists and cast your vote.
Our winners will be revealed next week — stay tuned!
GLASGOW 2025: THE IMPORTANCE OF PATIENT SUPPORT
It was fantastic to see so many of you join us at the Annual National Patient Education Event in Glasgow earlier this month.
Every year, we’re proud to host a national Patient Education Event for our community, and we’re already planning ahead for 2026!
We’re hoping to bring the event to Sheffield next year, with a provisional date of Saturday 6th June.
Pop it in your diary — more details to follow!
AMBASSADOR SPOTLIGHT
Regular readers will know that one of our Ambassadors, Bethann Siviter, is a regular writer for us and documents her various experiences as she navigates both her Neuroendocrine Cancer diagnosis, and the numerous medical departments she encounters along the way. Bethann is also autistic and simply accepts this as who she is. All of this can make navigating life admin more than a little challenging but Bethann retains a sense of humour like no other. We thought you might like to read her latest experiences and work as an Ambassador here
FEATURED FUNDRAISERS
We’re incredibly grateful for our amazing and supportive community. In recent weeks, a remarkable group of runners took to the streets in support of Neuroendocrine Cancer UK — raising awareness, generating vital funds, and paying tribute to their loved ones.
Thank you so much!
This week, we’re celebrating our amazing Vitality London 10,000 runners - who took to the streets of the capital, finishing in front of Buckingham Palace, to raise funds and awareness for Neuroendocrine Cancer UK.
William ran in honour of his grandmother, who has been bravely battling neuroendocrine cancer for over two years, raising an incredible £665.00.
Tom & Beth took on the 10K together, raising £1,537.50 in support of Beth's dad, who was diagnosed with NETs last year.
Theadora achieved a personal best and raised £597.50 in memory of her mum.
Hannah ran in memory of her dad, Paul, raising £1,137.50, honouring his legacy with every step.
Paul & Ellen - Paul, living with Stage 4 NETs, along with Ellen, raised £768.75, proving that strength and hope can go the distance.
A HUGE THANKS
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?
Visit our fundraising page below to explore the possibilities and start planning your next adventure today!
PANCREATIC ENZYME REPLACEMENT THERAPY (PERT) SUPPLY UPDATE
Neuroendocrine Cancer UK and partner charities have been working for two years to address ongoing UK shortages of pancreatic enzyme replacement therapy (PERT), including Creon. While the government has now secured additional supplies for 2025 and is in discussion with manufacturers for 2026, shortages are expected to continue into early 2027. Further reassurance and long-term planning are still urgently needed.
Feedback please
Since this is a new format for our newsletter, we wanted to check in and see how we're doing. We’d appreciate it if you could take a moment to answer two quick feedback questions below.
Thank you
We don’t receive NHS or government funding. We don’t have 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.
We look forward to seeing you next month and keeping you in the loop!
Neuroendocrine Cancer UK
