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Pancreatic Enzyme Replacement Therapy (PERT) Update 

Ongoing variability in the supply of pancreatic enzyme replacement therapy (PERT) — particularly Creon® 25,000iu capsules — has left some people struggling to obtain their prescription. We explain what manufacturers, the NHS and the Department of Health are doing, and where to turn for help.

Published: 3 weeks ago

By Leanne Talbot

Published: 3 weeks ago

By Leanne Talbot

Heatwave Advice: Staying Safe in Hot Weather

Hot weather can affect anyone, but it can be especially challenging for people living with long-term health conditions or undergoing cancer treatment. Read our practical advice on staying cool, keeping hydrated, recognising heat-related illness, and protecting your health during a heatwave.

Published: 5 months ago

By Beth Chesser

Published: 5 months ago

By Beth Chesser

Neuroendocrine Life Alliance (NLA) 2026 Patient Summit – What You Told Us 

The NLA 2026 Patient Summit brought together people affected by neuroendocrine tumours and ACC for a day of expert-led learning, shared experiences, and meaningful connections. Attendees highlighted the value of trusted information, community support, and the hope inspired by advances in research and treatment.

Published: 5 months ago

By Beth Chesser

Published: 5 months ago

By Beth Chesser

Neuroendocrine Tumours (NENs): New Treatments, Daraxonrasib & Why Genomic Testing Matters

Daraxonrasib is a promising new KRAS-targeted therapy that has shown significant benefits in metastatic pancreatic adenocarcinoma. But what does this mean for people with neuroendocrine tumours (NETs) or neuroendocrine carcinomas (NECs)? This article explains the differences between these cancers, why tumour biology matters, and how genomic testing can help guide personalised treatment decisions.

Published: 5 months ago

By Beth Chesser

Published: 5 months ago

By Beth Chesser

Neuroendocrine Cancer UK joins cancer coalition call for fairer PIP system – DEADLINE 28TH MAY

Neuroendocrine Cancer UK is standing alongside fellow cancer charities in calling for a fairer, more compassionate Personal Independence Payment system. Current assessments often fail to reflect the reality of NETs — long-term, complex conditions with symptoms that fluctuate day to day and are frequently invisible.

Published: 6 months ago

By Beth Chesser

Published: 6 months ago

By Beth Chesser

Meet Our New Nurses: Erica & Holly

We’re delighted to welcome Erica and Holly to the Neuroendocrine Cancer UK nursing team. With extensive NHS experience across oncology, palliative care, education, and patient wellbeing, they bring compassion, knowledge, and a shared commitment to supporting the neuroendocrine cancer community.

Published: 6 months ago

By Beth Chesser

Published: 6 months ago

By Beth Chesser

Have your say in shaping future priorities of neuroendocrine cancer research

Patients, carers and healthcare professionals are being asked to help shape the future of neuroendocrine cancer research. The second JLA survey invites you to review and prioritise the research questions gathered so far — the results will inform a final Top 10 agreed between patients, carers and clinicians.

Published: 6 months ago

By Beth Chesser

Published: 6 months ago

By Beth Chesser

An evening of support, awareness and generosity in Edinburgh

Neuroendocrine Cancer UK was chosen as the president's Charity of the Year at the Edinburgh Institute of Insurance & Financial Planning's annual dinner, where patient and staff member Craig Speirs received a standing ovation. The raffle raised more than £2,000 — and several guests pledged to take on the Edinburgh Kiltwalk.

Published: 6 months ago

By Beth Chesser

Published: 6 months ago

By Beth Chesser

2026 Research Grant Winners Announced: Advancing Innovation and Improving Care in Neuroendocrine Cancer

We announce the 2026 research grant winners, showcasing innovative projects set to improve care, treatment and outcomes for people with neuroendocrine cancer.

Published: 6 months ago

By Beth Chesser

Published: 6 months ago

By Beth Chesser

Practice-Changing Grant Awarded to Elizabeth Bradley to Improve Surgical Outcomes for Carcinoid Heart Disease

Elizabeth Bradley has been awarded £3,700 to investigate how nutrition and muscle strength influence recovery after cardiac surgery for carcinoid heart disease.

Published: 6 months ago

By Beth Chesser

Published: 6 months ago

By Beth Chesser
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