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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

£30,000 Pump Priming Grant Awarded to Prof. Martyn Caplin for Groundbreaking Neuroendocrine Carcinoma Research

Prof. Martyn Caplin has been awarded £30,000 to lead a pioneering study using single-cell technology to uncover shared genetic patterns in neuroendocrine carcinoma.

Published: 6 months ago

By Beth Chesser

Published: 6 months ago

By Beth Chesser

£26,500 Pump Priming Grant Awarded to Dr Felicity Williams for Innovative Carcinoid Heart Disease Research

Dr Felicity Williams has been awarded £26,500 to lead an innovative pilot study exploring high-intensity prehabilitation and nutritional support for patients with carcinoid heart disease ahead of surgery.

Published: 6 months ago

By Beth Chesser

Published: 6 months ago

By Beth Chesser

Call to Action – Timms Review of Personal Independence Payment (PIP)

The UK Government has launched the Timms Review of Personal Independence Payment (PIP), inviting disabled people, carers and organisations to submit evidence by 28 May 2026. This review will shape the future of disability benefits, focusing on fairness, accessibility and real-world impact.

Published: 6 months ago

By Beth Chesser

Published: 6 months ago

By Beth Chesser

Goodbye & Good Luck, Olivia

It is with mixed emotions that we say goodbye to Olivia after three valued years at NCUK. While she moves on to an exciting NHS role, her impact, compassion and connection to our community will continue.

Published: 7 months ago

By Beth Chesser

Published: 7 months ago

By Beth Chesser

Amplifying the Patient Voice Through Conference Engagement

NCUK strengthens the patient voice through national and international conferences, shaping research, care and policy in neuroendocrine and rare cancers.

Published: 7 months ago

By Beth Chesser

Published: 7 months ago

By Beth Chesser

Investing in Impact: Announcing Our First 2026 Research Grants

NCUK begins announcing recipients of its 2026 research funding, supporting innovative and practical projects to improve care for people with neuroendocrine cancer.

Published: 7 months ago

By Beth Chesser

Published: 7 months ago

By Beth Chesser

One NCUK: A Defining Moment for the Community

NCUK brought together ambassadors, staff, trustees and volunteers for the first time, creating space to connect, reflect and strengthen collaboration as One NCUK.

Published: 7 months ago

By Beth Chesser

Published: 7 months ago

By Beth Chesser

West of Scotland Patient Voices Take Rare Cancer Campaign to Westminster

On Thursday 19th March 3 members of the West of Scotland peer support group were invited to speak to Dr Scott Arthur MP about the rare cancer bill and how…

Published: 8 months ago

By Beth Chesser

Published: 8 months ago

By Beth Chesser

New patient platform aims to transform rare disease diagnosis through lived experience

A new initiative from Opalmedica is placing patient voices at the centre of efforts to improve rare disease diagnosis, with the launch of its innovative…

Published: 8 months ago

By Beth Chesser

Published: 8 months ago

By Beth Chesser
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