AMMF News

AMMF’s 2023 highlights

by Helen Morement, CEO The year 2023 has been a momentous one for AMMF, with the charity’s continued expansion, changes and developments in many areas, and its continuing and growing work in Europe.   As the charity has grown in recognition and influence, it became necessary to evolve from our original status as an unincorporated charity to that of a Charitable Incorporated Organisation...

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“Liver fluke related Cholangiocarcinoma”

A leading expert in the field of liver fluke related cholangiocarcinoma (CCA), Professor Ross Andrews, is the driving force behind the most comprehensive work yet on this subject: "Liver fluke, Opisthorchis viverrini related Cholangiocarcinoma" Editors: Narong Khuntikeo, Ross H Andrews, Trevor N Petney, Shahid A Khan Although considered relatively rare in the Western world, CCA has a very high inc...

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AMMF’s Change of Status

In 2002, AMMF was registered with the Charity Commission with the name, The Alan Morement Memorial Fund (registered charity no 1091915), and with the working title, AMMF.             Because of the continuing growth of the charity, AMMF’s trustees recently made the decision that the charity should transition as a legal entity from its existing unincor...

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Moving that dial towards better recognition for CCA …

Despite all the work AMMF has done over the years to raise the awareness of cholangiocarcinoma (CCA) - this disease with an increasing incidence and one of the worst prognoses out there - there remains a lack of awareness and little interest with those who have the power to move that dial and fully acknowledge CCA for what it is, and to improve the future for all diagnosed who remain under-represented and ...

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Cholangiocarcinoma landscape in Europe: Diagnostic, prognostic and therapeutic insights from the ENSCCA Registry

In 2015, ENSCCA (European Network for the Study of Cholangiocarcinoma) was founded with the aim of creating a pan-European interdisciplinary cooperative network to address the problem of cholangiocarcinoma (CCA) at the basic, translational and clinical levels.  Its first initiative was the creation of the ENSCCA Clinical Registry in 2016.  CCA, also known as bile duct cancer, is a cancer that is frequen...

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NICE approves pemigatinib for those with CCA and the FGFR2 fusion

“Today, 22 July 2021, the availability of pemigatinib marks a major milestone in the fight against cholangiocarcinoma, bringing new hope for our patients with this devastating type of liver cancer who have an FGFR2 genetic rearrangement. This advance, which requires our patients to have molecular testing, opens the door to gaining a much better understanding of the genetic footprint for this cancer an...

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AMMF’s CCA Patient & Carer Information Day

AMMF’s virtual Cholangiocarcinoma (CCA) Information Day, especially for patients and carers, took place on Thursday, 29 October 2020. As well our most important attendees - those who are living with CCA, and those who care for loved ones with CCA - there were clinical nurse specialists who wanted to learn more about cholangiocarcinoma and industry members, whose companies are working hard to develop drug...

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Patient Information Sheets – Chemo Regimes

AMMF is pleased to have worked with Dr Chiara Braconi of The Institute of Cancer Sciences, University of Glasgow, on producing a series of Patient Information Sheets for chemotherapy regimes for those with cholangiocarcinoma.  The series has been endorsed by ENS-CCA¹, under their Cost Action project. All the information sheets may now be downloaded here or from AMMF's Treatment Options section of the w...

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Covid-19 and CCA – Patient Survey Report

In the summer of 2020, Cancer521, supported by its members, conducted an online survey of people with rare and less common cancers to understand the impact on them of the Covid-19 pandemic so far, including any changes to treatment and care and their experiences of shielding.  More than 1,400 responses to the survey were received. AMMF, a member of Cancer52, took part in the survey, both in the set up and...

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AMMF’s CCA Data Project – Poster presentation at EASL International Liver Congress 2020

AMMF has long considered a major reason for so little awareness of cholangiocarcinoma and so little progress towards early diagnosis and effective treatments, is the lack of robust data to support what we see every day in our work – increasing incidence, heartbreaking mortality levels, and an ever growing number of young adults being diagnosed. We know there are major problems with terminology, with co...

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Survey of Patient Experiences during the COVID-19 Pandemic

AMMF and other members of the Cancer521 alliance of cancer charities and organisations have helped in the development of a survey of patients with rare and less common cancers to find out more about their experiences during the coronavirus pandemic. The survey is being organised by Cancer52, who will also analyse the results and share a full summary with all its charity members. The results of this surve...

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FDA approves Pemigatinib for CCA

The US pharmaceutical company, Incyte, has gained accelerated approval from the FDA (the US Food and Drug Administration), for their targeted therapy Pemazyre (pemigatinib) for the treatment of cholangiocarcinoma, (bile duct cancer)1. This follows the outcome of the clinical trial, FIGHT-202, in which adult patients with previously treated, unresectable locally advanced or metastatic cholangiocarcinoma w...

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NHS Cancer Programme team and COVID-19 updates

AMMF’s CEO, Helen Morement is attending the weekly virtual COVID-19 briefing meetings with the NHS Cancer Programme team ... Today’s meeting (07.04.2020) was chaired by David Fitzgerald (Programme Director, NHS Cancer Programme), Peter Johnson (National Clinical Director for Cancer, NHS England and NHS Improvement), and Cally Palmer (National Cancer Director for NHS England and NHS Improvement). ...

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COVID-19: An update from AMMF

This is an uncertain and worrying time for us all, but we realise that this must be especially so for all those with cholangiocarcinoma. AMMF is following government advice and, over the last couple of weeks, we have worked hard to put contingency plans in place to ensure our work can continue as smoothly as possible.  AMMF’s team is now working remotely and the charity continues, as always, to do all w...

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The ABC-06 study – first results out …

The first results of the ABC-06 clinical trial were formally presented by Dr Angela Lamarca of The Christie NHS Foundation Trust at the American Society of Clinical Oncology (ASCO) annual meeting in Chicago on 2nd June 2019. ASCO hosts the largest global cancer conference with over 45,000 attendees, and the ABC-06 trial results were presented in front of an audience of approximately 5,000. Dr An...

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Cholangiocarcinoma Experts of the Future!

Twelve aspiring medics from the Imperial College London School of Medicine who were involved in the new second year ‘Clinical Research and Innovation’ module, were selected to take part in a cholangiocarcinoma research experience in Khon Kaen, Thailand, in the summer of 2018. Tom O’Connor and Tom Hughes, members of the group of twelve, had already forged strong bonds with the Khon Kaen team during ...

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Global Cholangiocarcinoma Alliance launched!

A new, collective voice for cholangiocarcinoma, the Global Cholangiocarcinoma Alliance (GCA) was heard for the first time on World Cholangiocarcinoma Day, 12 February, 2019. Plans were announced to form the world’s first global cholangiocarcinoma alliance back in September 2018, at AMMF’s international workshop held at Imperial College London and attended by the six inaugural partners of World Chol...

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The NHS ‘Long Term Plan’ is published

In its ambitious plan, the NHS makes relatively few cancer commitments but, promisingly, takes an ‘all cancer’ approach, which by definition includes rare and less common cancers, instead of previous approaches which have sometimes prioritised the four more common cancers. The plan also focuses on moving more care into the community and out of hospital, accompanied by increased funding for primary an...

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AMMF’s Year in Review – highlights of 2018

The last year has been an exceptionally busy year for AMMF, and the following are just some of the highlights:   AMMF’s Cholangiocarcinoma Conference   International Cholangiocarcinoma Workshop   Data Analysis Project – and a new data analyst   Research funding awarded   Cholangiocarcinoma-UK AMMF’s Cholangiocarcinoma Conference We welcomed a record number of delegates ...

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AMMF’s Response to NHS England’s Draft Commissioning Policy re SIRT for Intrahepatic Cholangiocarcinoma

NHS-funded SIRT (selective internal radiation therapy) had been available for patients with intrahepatic cholangiocarcinoma through the CtE (Commissioning through Evaluation) programme until this funding was withdrawn on 31st March 2017 ‘to be evaluated’. In June 2018, NICE issued their draft Interventional Procedures Guide (IPG) for comment regarding the safety and efficacy of intrahepatic chola...

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ENS-CCA Congress, Rome, 21-23 June

AMMF is a member of the European Network for the Study of Cholangiocarcinoma (ENS-CCA¹), and was very pleased to be invited to attend the second ENS-CCA congress in Rome, 21 to 23 June 2018. More than 180 participants attended this congress, all dedicated to working towards improving the future for those with cholangiocarcinoma. During the three very busy days, 36 studies were presented, including 8 o...

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AMMF’s Response to NICE Recommendations re SIRT for Intrahepatic Cholangiocarcinoma

NICE (National Institute for Health and Care Excellence) are currently consulting on the safety and efficacy of SIRT (selective internal radiation therapy) for intrahepatic cholangiocarcinoma, and have made their draft recommendations available for comment. To see the draft recommendations, click here               These latest draft recommen...

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ABC-03 clinical study results published in British Journal of Cancer

"Circulating biomarkers during treatment in patients with advanced biliary tract cancer receiving cediranib in the UK ABC-03 trial" Results from the ABC-03 clinical study have been published in the British Journal of Cancer (21.06.18). Dr Alison Backen, Systemic Therapy Research Project Manager in Medical Oncology at The Christie NHS Foundation Trust, explains the study and the findings for AMMF:   ...

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Cholangiocarcinoma-UK

Following the Cholangiocarcinoma Workshop organised and hosted by Professor Nigel Heaton on Friday 19th January, Dr Shahid Khan introduced the Cholangiocarcinoma-UK group to the audience. The mission statement for Cholangiocarcinoma-UK, a group affiliated to the British Association for the Study of Liver Disease (a BASL Special Interest Group) is: “Cholangiocarcinoma-UK is a multi-disciplinary gro...

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New! The AMMF Cholangiocarcinoma Scholarship

AMMF is delighted to announce The AMMF Cholangiocarcinoma Scholarship, a three-year PhD award.   The first of these three-year AMMF funded PhD studentships is specifically to investigate the role of mutations in bile duct cancer (cholangiocarcinoma). The successful PhD student will be based at The Boulter Lab, located in the MRC Human Genetics Unit at the University of Edinburgh.  The Boulter lab is r...

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