AMMF News
Zanidatamab approved for NHS use by NICE
In April 2026, the National Institute for Health and Care Excellence (NICE) has published guidance recommending routine NHS use of zanidatamab for patients with HER2-positive advanced biliary tract cancers such as cholangiocarcinoma (bile duct cancer), gallbladder cancer, and cancer originating in the ampulla of Vater. What does this mean? NICE is responsible for assessing new medicines and making re...
Read MoreNICE publishes draft recommendation for larotrectinib
The National Institute for Health and Care Excellence (NICE) has issued draft guidance rejecting the use of larotrectinib on the NHS for patients with NTRK fusion-positive solid tumours, which includes a small number of people with cholangiocarcinoma (bile duct cancer). What does this mean? NICE is responsible for assessing new medicines and making recommendations about whether they should be adopted...
Read MoreMolecular profiling for patients with Cholangiocarcinoma in Scotland
What is molecular profiling? Cholangiocarcinoma tumours are not all the same. Even when they start in the same place, one person’s cancer cells can be different from another person’s. In part, this depends on which gene faults might be present. These faults can alter the way the cancer cells look, behave, and react to different treatments. Gene faults can sometimes be used to our advantage because t...
Read MoreThe Rare Cancers Act is now law
The Rare Cancers Bill has received Royal Assent from The King, becoming law - it is now the Rare Cancers Act 2026. The Rare Cancers Bill, which was launched as a Private Member’s Bill by Dr Scott Arthur MP in October 2024, completed its passage through The House of Commons and The House of Lords before being signed into law by The King on 5 March 2026. The legislation aims to incentivise research and ...
Read MoreCholangiocarcinoma Awareness Month – February 2026
February is Cholangiocarcinoma Awareness Month. Each year during this month AMMF redoubles its efforts to raise awareness of cholangiocarcinoma as widely as possible, and 2026 was no different. Throughout February 2026 AMMF shone the light on raising awareness of cholangiocarcinoma (CCA). National Cancer Plan On 4 February 2026, World Cancer Day, AMMF welcomed the publication of a new 10-y...
Read MoreThe UK Government has published their National Cancer Plan for England
On World Cancer Day (4th February) 2026, the UK Government published a National Cancer Plan for England – the first since 2015. The 10-year plan includes a range of initiatives and targets for the NHS to improve cancer patient outcomes. The National Cancer Plan includes a target for 3-in-4 cancer patients diagnosed from 2035 to be cancer-free or living well after five years and for England to become a...
Read MoreNICE publishes draft recommendation for zanidatamab
The National Institute for Health and Care Excellence (NICE) has issued draft guidance rejecting the use of zanidatamab on the NHS for patients with HER2-positive advanced biliary tract cancer such as cholangiocarcinoma (bile duct cancer), gallbladder cancer, and cancer originating in the ampulla of Vater. What does this mean? NICE is responsible for assessing new medicines and making recommendations...
Read MoreBiliary tract cancer patient and caregiver experiences survey 2025 report
AMMF has published a new report which summarises the findings from an online survey conducted by the charity in 2025. To help improve our understanding of the experiences of people diagnosed with biliary tract cancers (BTCs) including cholangiocarcinoma (bile duct cancer), gallbladder cancer, and ampullary cancer, as well as their partners/family/caregivers, AMMF conducted an online survey in summer 2...
Read MoreA message from Helen Morement, DSc (hc), AMMF’s CEO
As we come to the end of 2025, we look back on some of the events of an incredibly busy year for AMMF. During the year, AMMF has continued to work with a number of major projects and campaigns to improve the recognition of cholangiocarcinoma (CCA). Our Rethink Liver Cancer campaign continued, and we were delighted to have had the opportunity to work with the celebrity photographer, Rankin, who photogr...
Read MoreThe Scottish Government approve molecular profiling programme for cholangiocarcinoma patients
The Scottish Government has announced that comprehensive molecular profiling tests will be available to cholangiocarcinoma (bile duct cancer) patients across Scotland from February 2026. The announcement was made by Jenni Minto (Minister for Public Health and Women's Health) on 17 December 2025 in response to a written question by Marie McNair, MSP for Clydebank and Milngavie. "I am pleased to anno...
Read MoreAMMF is Shaping the Future for Cholangiocarcinoma in Westminster
On 25 February 2026, as part of Cholangiocarcinoma Awareness Month, AMMF’s Rethink Liver Cancer campaign is returning to Westminster with a reception in the House of Commons’ Churchill Room. With the UK Government set to announce the National Cancer Plan for England in early 2026, our theme is “Shaping the future: from early detection to improved survival”. We will reflect on recent advances...
Read MoreIn Memory of James Hastings
The AMMF Team was deeply saddened to hear of James Hastings' passing late last week. James passed away peacefully with his family by his side in the early hours of Thursday 6th November 2025. Our thoughts are with his family and friends during this sad time. James was diagnosed with stage four cholangiocarcinoma (bile duct cancer) after developing signs of jaundice (yellowing of the skin and eyes) in ...
Read MoreIvosidenib approved for reimbursement in Ireland
In October 2025 the Health Service Executive (HSE) in Ireland approved reimbursement of ivosidenib (Tibsovo®), a targeted therapy for people with advanced cholangiocarcinoma (bile duct cancer) with an IDH1 gene fault. This now brings Ireland into line with the UK and other European countries which have already approved use of the treatment. What is a targeted therapy? Cholangiocarcinoma tumours vary...
Read MoreScottish Parliament debates cholangiocarcinoma awareness
On Thursday 30 October 2025, the Scottish Parliament hosted its first ever debate specifically about cholangiocarcinoma (bile duct cancer) in recognition of Liver Cancer Awareness Month. The debate was secured by Marie McNair, MSP for Clydebank and Milngavie, following her attendance at AMMF’s Scottish Parliament (Holyrood) reception in June 2025, and in support of her constituents Anne and Derek Wi...
Read MoreScottish Parliament to debate cholangiocarcinoma awareness
On Thursday 30 October 2025, the Scottish Parliament will host a debate about cholangiocarcinoma (bile duct cancer) to coincide with Liver Cancer Awareness Month. The debate has been secured by Marie McNair, MSP for Clydebank and Milngavie, following her attendance at AMMF’s Scottish Parliament (Holyrood) reception in June 2025. Marie’s motion about cholangiocarcinoma awareness, which will form the ...
Read MoreJess’s Rule: New Guidance for GPs in England
AMMF welcomes the new NHS initiative called Jess’s Rule that urges GPs in England to “think again” if they see a patient three times with the same symptoms or concerns, particularly if symptoms persist, get worse, or remain unexplained. Jess’s Rule, introduced in September 2025, is named in memory of Jessica Brady who died of cancer in December 2020 at the age of 27. In the 5 months leading up t...
Read MoreDurvalumab approved for reimbursement in Ireland
In September 2025 the Health Service Executive (HSE) in Ireland approved reimbursement of the immunotherapy, durvalumab, for people diagnosed with advanced biliary tract cancers, such as cholangiocarcinoma (bile duct cancer) and gallbladder cancer. This now brings Ireland into line with the UK and other European countries which have already approved use of the treatment. Durvalumab is recommended as a f...
Read MoreCCA-UK – Annual Meeting
1-2 December, 2025 Registration is now open!This will be the UK's largest multi-disciplinary meeting dedicated to cholangiocarcinoma research, bringing together clinicians, researchers and advocates for two days of collaboration, innovation and progress in bile duct cancer. The programme will feature national and international speakers, cutting-edge research and dedicated sessions on the molec...
Read MoreAMMF unites with cancer charities to urge the government to fully fund the National Cancer Plan
On Wednesday 27th August 2025, AMMF united with over 60 national charities as One Cancer Voice to call on the UK government to deliver an ambitious, fully funded National Cancer Plan for England. New projections from Cancer Research UK suggest that between now and 2040, 6.3 million new cancer cases are expected to be diagnosed across England. In the 1970s, someone in England was diagnosed with cancer ...
Read More10 Year Health Plan for England
On Thursday 3rd July, the UK Government published its 10 Year Health Plan to reform the NHS in England. The ambition of this 10 Year Plan is to fix the foundations of the NHS to meet increasing demand and provide significant and lasting benefits for all NHS patients. The 10 Year Health Plan follows a report by Lord Darzi which concluded the NHS was in ‘critical condition’ and outlined the challenges...
Read MoreShaping the new National Cancer Plan
The Government is planning to reform the NHS in England, and as part of this, it is developing a new National Cancer Plan with the aim of improving cancer survival over the next decade. The National Cancer Plan will encompass the whole cancer pathway including: Prevention early diagnosis treatment living with and beyond cancer research & development AMMF’s contribution To he...
Read MoreAddressing shortages of pancreatic enzyme replacement therapy (PERT)
There are problems with the supply of pancreatic enzyme replacement therapy (PERT) which has made it difficult to obtain for the last year and shortages are predicted to last until 2026. What is pancreatic enzyme replacement therapy (PERT)? Pancreatic enzyme replacement therapy (PERT) is a prescription medicine used to treat pancreatic enzyme insufficiency (PEI). PERT is a capsule taken with food to ...
Read MoreThe Lancet publish an article co-authored by AMMF’s CEO for World CCA Day 2025
For World Cholangiocarcinoma (CCA) Day on 20th February 2025, the Lancet has published an article, co-authored by AMMF’s Founder and CEO Helen Morement, titled “Understanding Cholangiocarcinoma – perspectives from three European advocacy groups”. The article, which was also co-authored by Elisabeth Baucells of Asociación de Tumores de Vías Biliares (ATUVIBI) from Spain and Paulo Leonardi of ...
Read MoreHalf of cancer patients not getting the right treatments
On Tuesday 19th February 2025, BBC News reported that audits conducted by the National Cancer Audit Collaborating Centre (NatCan) across nine major cancers (responsible for 80% of cases) have highlighted significant variation between hospitals and up to half of patients not getting the right treatment. According to the BBC, NatCan said that while a minority of patients would be choosing not to have trea...
Read MoreAMMF founder awarded an Honorary Doctorate for services to medicine and science
Helen Morement, the founder and Chief Executive of AMMF - The Cholangiocarcinoma Charity has been awarded the honorary degree of Doctor of Science honoris causa from the University of Nottingham in recognition of her service to medicine and science over more than two decades. Helen Morement, CEO and founder of AMMF Helen was nominated for this prestigious degree by Professor Kevin Gaston, Profess...
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