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June 2025 | Newsletter No.6 | #ncukintheloop
PATIENT STORY
Learning to Breathe Again, by Laura
Neuroendocrine Cancer Site: Lung Neuroendocrine Cancer – Atypical Carcinoid (AC)
"Finding out I had Lung Neuroendocrine Cancer at the age of just 28, made me dig deeper than I thought possible"
PATIENT BLOG
TRAVELLING - BE PREPARED, BY KATH LEWIS
As we near the summer holidays, we often get enquiries about travelling and taking holidays, in the UK and further afield. With medication and rules to consider, who better to share some tips than one of our patient ambassadors. Check out Kath's patient blog below.
NEW WEBINAR
Nikie Jervis - Neuroendocrine Cancer UK, shares expert insights into Pancreatic and Duodenal NENs. Topics include:
- An overview of the Pancreas & Duodenum
- Understanding Neuroendocrine Neoplasms (NENs)
- Diagnosis pathways and considerations
LATEST NEWS
Innovative Research Fuels Hope for Personalised Lung Neuroendocrine Cancer Care
In a major advancement for patients with Lung Neuroendocrine Tumours (Lung NETs), a research team led by Dr Jules Derks at Maastricht University, in collaboration with the USA’s NET Research Foundation, has unveiled a significant step forward in the quest for personalised treatment for this rare and complex cancer type.
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.
People also raised money through activities like golfing, trekking, and baking!
Together, they’ve raised thousands and helped spark vital conversations about a cancer that is too often overlooked.
Thank you so much!
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? 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!
JULY'S WEBINAR: Tired of Fatigue?
SPEAKERS: Claire Kempton, Clinical Psychologist at Maggie’s Oxford
WHEN: Date: 15th July 2025 | Time: 6.00 - 7.30pm
PERT SHORTAGES SURVEY
We know PERT shortages are deeply stressful for those with NETs, NEC, PDAC, pancreatitis, and cystic fibrosis. We're monitoring the issue, pushing for action, and have launched a second survey to hear from those affected.
If you or someone you care for has been affected by PERT shortages, please take our short, joint charities, survey to share your experience:
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!
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 have 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
