March 2026
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March 2026 | Newsletter No.15 | #ncukintheloop
Hello and welcome to this month's Loop!
Loop is a monthly newsletter from Neuroendocrine Cancer UK which is dedicated to bringing you the latest updates and insights related to neuroendocrine cancer.
Upcoming Patient Event - Sheffield 6th June
Join us on Saturday 6 June 2026 at the Crowne Plaza, Sheffield for the Neuroendocrine Life Alliance Patient Summit, delivered in collaboration with AMEND. This full-day event is designed for patients and families affected by neuroendocrine conditions, bringing together expert speakers to share practical information and the latest updates on topics including diagnosis, genetics, active surveillance, wellbeing, nutrition and research.
Places are limited, so we encourage you to register early to secure your place. 👉
Patient Story: The Healing Power of Movement
Pauline’s story offers a relatable glimpse into life with neuroendocrine cancer, where the challenges don’t simply end with treatment. Facing fatigue and reduced confidence, she found that gently reintroducing movement, at her own pace, helped her rebuild strength and reconnect with her body. Her experience highlights how small, manageable steps can play a powerful role in supporting recovery and wellbeing.
A day in the life of… a Clinical Oncologist
In this “day in the life” feature, Professor Jon Wadsley, a Clinical Oncologist at Weston Park Cancer Centre in Sheffield, offers an insight into his varied and evolving role treating patients with neuroendocrine tumours. From leading multidisciplinary discussions to delivering advanced therapies and driving national research, his work highlights the complexity, collaboration and innovation involved in improving outcomes for people living with rare cancers.
New Patient Platform Aims to Reduce Delays to Diagnosis Through Lived Experience
NCUK are delighted to be a collaborator of a new patient-led initiative from Opalmedica which is aiming to transform how rare diseases are detected, by putting lived experience at the heart of diagnosis. Through its KLEOS™ “My Rare Journey” platform, patients can share their diagnostic stories to help identify patterns, support GPs, and ultimately reduce the long delays many face before receiving answers. With millions affected by rare conditions and diagnostic journeys often taking years, this approach highlights the growing role of patient insight in shaping faster, more accurate care.
Your story could make a real difference in helping others get a quicker diagnosis, please take a moment to complete the questionnaire by clicking on the button below.
Ambassador Spotlight
From Diagnosis to Advocacy: Why I Became an Ambassador
... After being diagnosed with a rare lung neuroendocrine tumour, Chris’s journey has involved major surgery, ongoing treatment, and learning to navigate life with neuroendocrine cancer. Now, as an Ambassador for Neuroendocrine Cancer UK, he shares his experience to help others feel less alone....
Read Chris' full story HERE
Do You Have a pNET (Pancreatic Neuroendocrine Tumour) Diagnosis?
Help Shape a New Quality of Life Questionnaire
We are inviting people who have been diagnosed with pancreatic neuroendocrine tumours to take part in this short survey - your input will directly contribute to improving how quality of life is measured for PanNET patients.
To learn more and take part please click on the button below.
West of Scotland Patient Voices Take Rare Cancer Campaign to Westminster
On Thursday 19th March, members of the West of Scotland peer support group met with Dr Scott Arthur MP to discuss the Rare Cancer Bill and its implications for patients in Scotland. Sharing their lived experiences of neuroendocrine cancer, the group highlighted ongoing challenges while expressing hope for improved support and treatment. With the bill now law in England, discussions are underway about its future in Scotland, alongside continued advocacy for greater investment, policy support, and access to vital services.
The Invisible Cancer Podcast: same great series, new name
We’re excited to relaunch our podcast as The Invisible Cancer Podcast, raising awareness of neuroendocrine cancer. The series will feature real-life stories, expert insights, and practical advice to support those affected.
Hosted by our CEO, Lisa Walker, the first episode launches in mid-April, featuring Kerie and Gordon sharing why it is so important to raise awareness and how they found the experience of having their stories discussed in the media as part of the Invisible Cancer report.
Upcoming Webinar: 'Research' with Professor John Wadsley - Wednesday 1st April, 6pm
This webinar explores your role in research, including clinical trials.
People living with neuroendocrine cancer (NET or NEC) play a vital part in shaping studies, from early ideas to final outcomes, helping ensure research is meaningful, ethical, and truly patient-focused.
Introducing Our New Fundraising Newsletter: Inspiring Stories and Ways to Get Involved
Earlier this month we were excited to launch our new quarterly fundraising newsletter!
Each edition is packed with real-life experiences from supporters who have gone above and beyond to fundraise, alongside stories from those who have benefited from the charity’s work. It will also highlight a range of ways to get involved, whether you’re looking to take on a challenge, support an event, or make a difference in your own community.
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.
All agreed and scheduled groups are listed on our Events Calendar : which is being currently populated with all agreed 2026 dates.
Fundraise for Us and Support the Neuroendocrine Cancer Community
We’re incredibly grateful for our amazing and supportive community. 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!
