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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

Positive Development in NICE Cabozantinib Appraisal Appeal

A NICE appeal panel has upheld three key appeal points on cabozantinib for advanced neuroendocrine tumours, sending the appraisal back to committee for further consideration. It is not yet a recommendation for routine NHS use — but it keeps important evidence on survival benefit under review.

Published: 3 months ago

By Beth Chesser

Published: 3 months ago

By Beth Chesser

The Power of Peer Support: Why Connection Matters in the Neuroendocrine Cancer Community

Neuroendocrine cancer can feel like a lonely diagnosis, but peer support can make a real difference. Neuroendocrine Cancer UK support groups bring people together to share experiences, practical advice, understanding and hope, helping patients, families and carers feel less alone.

Published: 3 months ago

By Beth Chesser

Published: 3 months ago

By Beth Chesser

BREAKING NEWS: SMC Approves Cabozantinib for Some People with Advanced Neuroendocrine Tumours in Scotland

Neuroendocrine Cancer UK welcomes the Scottish Medicines Consortium's decision to accept cabozantinib (Cabozantinib Ipsen®) for restricted use within NHS Scotland for eligible patients with advanced pancreatic and extra-pancreatic neuroendocrine tumours. 

Published: 3 months ago

By Beth Chesser

Published: 3 months ago

By Beth Chesser

Everolimus and Me, by David

David shares his experience of starting Everolimus for advanced neuroendocrine cancer — from the nerves that came with a new daily tablet, to the reassurance of speaking to another patient through the Neuroendocrine Cancer UK Helpline.

Published: 4 months ago

By Leanne Talbot

Published: 4 months ago

By Leanne Talbot

We’re Hiring: Administration Co-ordinator (Organisational Support)

Join Neuroendocrine Cancer UK as our **Administration Co-ordinator (Organisational Support)** and help keep our charity running smoothly. This exciting opportunity is perfect for an organised and proactive individual looking to make a meaningful difference while supporting our mission to improve the lives of people affected by neuroendocrine cancer.

Published: 4 months ago

By Beth Chesser

Published: 4 months ago

By Beth Chesser

The questions that matter most: Top 10 neuroendocrine cancer research priorities agreed

People living with neuroendocrine cancer, carers and healthcare professionals have agreed the Top 10 research priorities through the James Lind Alliance Priority Setting Partnership, helping to shape the future of neuroendocrine cancer research.

Published: 4 months ago

By Beth Chesser

Published: 4 months ago

By Beth Chesser

Update on the Timms Review of PIP (Interim Report published) – Key Points 

The Timms Review interim report finds that Personal Independence Payment (PIP) remains a vital source of support but highlights concerns about the current assessment process. Read the key findings, next steps and what they could mean for people affected by neuroendocrine cancer.

Published: 4 months ago

By Beth Chesser

Published: 4 months ago

By Beth Chesser

Five Years of Impact: See the Difference We’ve Made Together 

Discover how NCUK has made a lasting difference over the past five years. Our 2020–2025 Impact Report highlights achievements in patient support, research, education, awareness, advocacy and community engagement, celebrating the collective impact of our supporters and the neuroendocrine cancer community.

Published: 4 months ago

By Beth Chesser

Published: 4 months ago

By Beth Chesser

Advancing Neuroendocrine Cancer Care: Highlights from the NET Masterclass

Neuroendocrine Cancer UK's Health & Well-being Specialist Cancer Nurse, Erica, shares highlights from the inaugural NET Masterclass. Bringing together healthcare professionals from around the world, the event explored the latest advances in neuroendocrine cancer diagnosis, treatment and multidisciplinary care, with valuable learning to enhance support for patients and families.

Published: 4 months ago

By Beth Chesser

Published: 4 months ago

By Beth Chesser
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