Ammf News

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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CCA Awareness Month photo comp – with a twist!

February is Cholangiocarcinoma Awareness Month and this year AMMF wants to see your furry, feathery or even scaly friends showing their support - but there's a twist! Your pets must be sporting something in AMMF purple.  So, AMMF's CCA Awareness Month 2019 photo comp is: Animals for AMMF – Your pets in Purple! We would love to see photos/videos of your pets in purple. You can be creative, you can be in...

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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 delegate...

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PHOTOSTENT-02 Report is published

The findings of the multicentre PHOTOSTENT-02 trial¹ (which ended in 2012) have now been published. This study investigated the possible benefits of the use of stenting plus photodynamic therapy (PDT)² against stenting alone in those with obstructive jaundice caused by cholangiocarcinoma (bile duct cancer or biliary tract cancer (BTC)). It seems that those patients who received PDT in addition to st...

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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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UK contact numbers for medical advice during the holidays

As the long festive break begins, a reminder for all cholangiocarcinoma patients and their carers in the UK – if you have medical concerns during Christmas and New Year holidays, especially if you are undergoing treatment, first try the contact numbers you will have been given by your hospital or CNS (clinical nurse specialist) or if they are not available, for help and advice contact: ENGLAND - N...

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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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AMMF launches ‘Our CC Family – Your Story’

            For the past five years during each February, Cholangiocarcinoma Awareness Month, AMMF has run a daily Guest Post feature on Facebook, which has proved to be extremely important to our supporters. Over those years, the response to this feature has grown enormously and, because of the limitation of the number of days in the month, we know that ...

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Now Published! The MDT: Cholangiocarcinoma Patients’ Observations

“The multidisciplinary team meeting in the UK from the patients’ perspective: comments and observations from cholangiocarcinoma patients and their families”   The thoughts of cholangiocarcinoma patients and their families on what they understood an MDT meeting to be, and their experiences around such meetings, were the basis of a paper by AMMF CEO Helen Morement, which has now been publis...

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The Cancer52 CNS Report

Through their work, Clinical Nurse Specialists (CNS) can bring invaluable support and humanity to the treatment and care of their patients. To demonstrate the importance of their work, and how it can improve the quality of life for patients diagnosed with the rare and less common cancers, Cancer52¹ have produced a report: “Clinical Nurse Specialists working with people with rare and less common...

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Amble for AMMF 2017

The 2017 Amble for AMMF will take place on Sunday, 3rd September, and we invite all AMMF’s supporters to join with us in this event! On the first Sunday in September each year, we bring together all AMMF's supporters, wherever you are in the world, to raise funds and awareness for AMMF and cholangiocarcinoma. How it works: Amble any distance, anywhere. You can join in wherever you are in the UK or i...

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AMMF joins European Reference Network (Rare-Liver)

AMMF is now a representative and advocate for cholangiocarcinoma patients within ERN-RARE-LIVER, the rare hepatic disease section of the European Research Networks. ERN RARE-LIVER is looking to connect expert centres across Europe, including the UK, to improve access to diagnosis, treatment and high quality care for patients with rare liver diseases. To find out more about the work of the ERNs click...

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Professor Narong’s fight against cholangiocarcinoma hits the headlines

The work of Professor Narong Khuntikeo, who was a keynote speaker at AMMF’s cholangiocarcinoma conference earlier this year, has been hitting headlines in the health sections of the British press over the last few days. In the Isaan region, which has the world's highest incidence of cholangiocarcinoma¹, millions of Thais regularly eat a dish made from fresh water river fish.  This fish dish, koi ...

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New insights to the mechanisms driving cholangiocarcinoma

An enormous unmet clinical need exists for novel therapies in cholangiocarcinoma (cancer of the bile ducts). This disease has a poor prognosis; patients often present too late for the only curative procedure - surgical resection, and investigations to obtain tissue for diagnostic confirmation are invasive and often inconclusive. There is currently no serum biomarker of the disease, which would aid early dia...

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AMMF’s Conference 2017 – Presentations

Here we share some of the presentations from AMMF's Cholangiocarcinoma Conference, held on 11th May 2017. (Please note, we are unable to share the research presentations as much of the work we heard about is as yet unpublished and, for that reason, must remain confidential.) To download Dr Shahid Khan's presentation, “Cholangiocarcinoma - An overview”, click here       ...

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The BILCAP study results …

With the kind permission of Professor John Primrose, AMMF is now able to share the BILCAP presentation slides from the ASCO 2017 meeting. These slides show details of the BILCAP study and its outcome.  The study looked at whether or not giving cholangiocarcinoma patients Capecitabine chemotherapy following resection would be beneficial. The outcome is positive - Capecitabine will now be recommended t...

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BILCAP results show chemo improves survival

AMMF welcomes the encouraging results announced today by Cancer Research UK following the BILCAP trial into the use of the chemotherapy drug Capecitabine (Xeloda) for bile duct cancer (cholangiocarcinoma) patients following surgery. The three year survival improved by almost a quarter (23 per cent) in patients who were given Capecitabine, and the average survival was increased to 53 months from 36 months...

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AMMF’s Cholangiocarcinoma Conference 2017

AMMF will bring together scientists, researchers, medics and patients from around the world at its conference dedicated exclusively to cholangiocarcinoma, on 11 May, 2017 at the Radisson Blu Hotel, Stansted Airport, Essex. With the date just a couple of weeks away, a press release has now been distributed sharing information on what promises to be a very interesting and thought provoking day ... &...

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AMMF CEO interviewed by Pan European Networks journal …

AMMF CEO Helen Morement was recently interviewed by the Pan European Networks journal and, in a 3-page article, discusses some of the known and suspected causes of cholangiocarcinoma, why diagnosis remains so difficult, current and future treatment options, as well as the wider work of the charity throughout the UK and beyond. With the article published just ahead of the second World Cholangiocarcinoma Day...

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AMMF’s brochure – updated …

AMMF’s brochure has been updated and is now available in two versions - a printed version and a download version available from our website. Simple and straightforward, this 6-page brochure contains information on AMMF and its aims, and provides details on cholangiocarcinoma in an easy to understand way. Everyone can use the brochure to raise the awareness of cholangiocarcinoma and of AMMF - make su...

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