AMMF News
New Cancer Strategy for England published
The report, “Achieving world-class cancer outcomes: a strategy for England 2015-2020”, has just been published and has been widely welcomed by many in the cancer communities, including Cancer52. In January 2015, The Independent Cancer Taskforce1 was set up to develop a five-year strategy for cancer services. The report is the result of responses to a Call for Evidence, outputs from 30 workshops, ...
Read MoreCholangiocarcinoma mortality higher than incidence?
The survival rate for cholangiocarcinoma is recognised to be extremely low, but how can mortality be higher than incidence? The statistics in the recently published NCIN1/Cancer522 Rare and Less Common Cancers report show not only that the incidence of cholangiocarcinoma is increasing year on year, but also that the mortality figures for the years 2012 and 2013 are higher than the incidence. This is also r...
Read MoreAMMF and the Rare Cancer Report
By Helen Morement A year ago, I was invited to be part of the advisory board for a new collaborative project being undertaken by Public Health England's National Cancer Intelligence Network (NCIN1) and Cancer522. This aim of this project was to produce, for the first time, a list of as many of the rare and less common cancers as possible together with their correct ICD-10 codings3 and their incidence and m...
Read MoreAMMF’s latest newsletter …
Our latest newsletter is now in circulation. We share AMMF’s news daily on our website and via social media, especially through our active Facebook page, but producing a newsletter gives us a chance to gather together and review the most outstanding events of the recent past. It also gives us an opportunity to especially remember those we have recently lost cholangiocarcinoma and to thank their fami...
Read MoreCC Awareness Month 2015 Guest Posts
Thank you to each person who took their courage in both hands and contributed a Guest Post for AMMF’s Facebook page during Cholangiocarcinoma Awareness Month 2015. What incredibly moving stories were shared by those who have lost precious people to cholangiocarcinoma, from those currently undergoing treatment and from all too few “survivors”. It was heartwarming to see the kind and supportive co...
Read MoreAMMF Awards Research Fellowship
AMMF awards a Research Fellowship to Dr Pui Man (Gemma) Choy AMMF has agreed to fund a Research Fellowship at the Institute of Hepatology London for a period of two years, beginning March 2015. Grants totalling £82,060 will be made over this two year period to enable Dr Pui Man (Gemma) Choy to continue research on the molecular mechanisms of cholangiocarcinoma development that AMMF has already been suppor...
Read MoreBLT’s ‘Your Liver’ Campaign
AMMF is pleased to support the 'Your Liver' campaign, a British Liver Trust campaign in partnership with MediaPlanet UK. Launched on 13th March, with a supplement in The Independent and a dedicated website, the aim of the campaign is to highlight liver diseases and is a good opportunity to raise the awareness of cholangiocarcinoma, one of the least known and poorly understood of the liver diseases. ...
Read MoreAMMF at Imperial College 11.02.15
This report on the research presentations and Q&A session at AMMF's event at Imperial College London on 11 February, has been written by Rebecca Morement, who is currently working as an intern with the charity. A philosophy graduate of the University of York, Rebecca has a keen interest in bioethics, and is gaining a real insight and understanding of the problems associated with cholangiocarcinoma. ...
Read MoreCCF Conference, 5 & 6 February, Salt Lake City, Utah
As part of Cholangiocarcinoma Awareness Month, AMMF's Helen Morement, together with Dr John Bridgewater and Professor Juan Valle from the UK, joined with scientists and clinicians from across the US at The Cholangiocarcinoma Foundation's conference in Salt Lake City, to hear of the progress being made on both sides of the Atlantic towards our shared goal - a cure for cholangiocarcinoma. Amongst the emine...
Read MoreCancer52 and Rarer Cancers – Raising the profile
AMMF was represented by Helen Morement at Cancer52's event on 03 March 2015, the aim of which was to raise the profile of the rare and less common cancers at a key time in cancer strategy development ... Speakers included Daniel Ratchford, Chief Executive of Quality Health, Sean Duffy, National Clinical Director for Cancer, and Dawn Green a pseudomyxoma survivor who bravely spoke of her experiences of li...
Read MoreSaatchi Bill axed …
The Liberal Democrats have vetoed a proposed law seeking to give doctors legal protection to use innovative treatments on patients when other options have been exhausted. The Lib Dem Health Minister, Norman Lamb, said he wanted to avoid “the risk of unintended consequences” of Lord Saatchi’s medical innovation bill, which went unopposed in a third reading by the House of Lords and was set to go to ...
Read MoreAMMF at Imperial College London
Information for all attendees at the AMMF event at Imperial College London on Wednesday, 11 February, 2015: If you have requested a place at this event, by now you should have received a confirmation email (as at 9 February) with venue details, and a copy of the day's programme. If you haven't received an email, please see below. The final details of the venue and the day's programme are as follows: ...
Read MoreFebruary is CC Awareness Month
During February 2015, AMMF will be redoubling its efforts to raise the awareness of cholangiocarcinoma (CC) throughout the UK and beyond. Throughout the month we will be awareness raising, fundraising and sharing information. Look out for: • Daily Guest Posts on AMMF's Facebook page. • New information on research AMMF is supporting. • AMMF's exclusive day at Imperial College. ...
Read MoreAMMF at the Cancer52 Parliamentary Event
"The hidden majority - improving outcomes for people with rare and less common cancers ..." This was the title of the Cancer52 event, hosted by John Baron MP, Chairman of the All Party Parliamentary Group on Cancer, held in the House of Commons on 10th December 2014. Why "The hidden majority"? Simply, this describes the shocking fact that 54% of cancer deaths in the UK are attributable to the rarer a...
Read MoreAMMF supports Imperial’s CC Biomarker Repository
Following recent discussions, AMMF has now approved a grant of £30,000 to help support the national cholangiocarcinoma biomarker repository at Imperial College London. This funding will help to employ a technician who will log the receipt of existing samples that have already been collected at 8 sites* around the UK, plus new ones as they arrive, register in detail each sample and the patient information ...
Read MoreMDT – the CC patient’s perspective
A report on AMMF’s presentation at the ESSO-BASO* Cancer MDT Course, Liverpool, November 2014 By Helen Morement (To view the course programme, click on the image above.) I was invited by Mr Hassan Malik, Consultant Hepatobiliary Surgeon and Clinical Lead at University Hospital, Liverpool to speak to an audience of surgeons at the Cancer MDT Course, on 01 November 2014, on the subject, "MD...
Read MoreA new study highlighting early BTC symptoms …
For the first time, a study on the early symptoms of pancreatic and biliary tract cancer (bile duct cancer/cholangiocarcinoma) in patients diagnosed with these diseases has been carried out and the findings have now been published in BMJ Open1 in a paper entitled, "A case-control study comparing the incidence of early symptoms in pancreatic and biliary tract cancer"2. This is particularly interesting t...
Read MoreProgress report from Institute of Hepatology
In May 2013, AMMF agreed a research grant of £34,800 with Professor Roger Williams, Director of The Institute of Hepatology, London. To support the work of Dr Salvatore Papa and his team on “Understanding the molecular basis for the development of intrahepatic cholangiocarcinoma.” The grant is to be given in three parts at annual intervals, the first instalment was made in 2013 with, as agreed, a pr...
Read MoreAMMF supports research in Edinburgh
During an informative visit in April 2014 to the Scottish Centre for Regenerative Medicine, University of Edinburgh, AMMF's Helen Morement met Professor Stuart Forbes and his team who are working on novel cholangiocarcinoma research. They are studying the macrophages that help to drive intrahepatic cholangiocarcinoma, including the signals involved (Wnt and Notch) and, based on the results, will work on the...
Read MoreAMMF signs Joint VBA Statement
Following the recent announcement by the Department of Health concerning the Cancer Drugs Fund (CDF), many of the member organisations of Cancer52*, including AMMF, were concerned by the section regarding the removal of clinically effective drugs from the CDF should another drug be deemed more clinically effective, and by the section concerning the future of the Fund after March 2016. (To read the DoH an...
Read MoreCC gets a double page spread
It rarely happens this way round, but AMMF was recently contacted by Alan Shaw, the lead reporter at The Weekly News, who said he had just discovered a disease he found to be, "... intriguing for us as it's not something of which I was previously aware, and the figures are truly frightening." The disease? Cholangiocarcinoma. Alan offered to run a double-page spread in the health section of The Weekly N...
Read MoreAMMF’s further grant for BI-010 research
The BI-010 biomarker work continues ... Following promising initial results from the BI-010 cholangiocarcinoma biomarker research being carried out by Dr Hayley Whitaker and her team at the Cambridge Research Institute, AMMF has now agreed to a further grant of £10,400 to be given over 2 years, to enable this work to continue. To read about this further BI-010 work and details of the grant application,...
Read MoreBiosamples and CC Biobanks …
AMMF liaises with The Cholangiocarcinoma Foundation in the US where and when we can, but it is important to bear in mind that what happens in the US re treatments, research, etc, can at times be very different to the situation in the UK. For example, after the CCF recently put out a request for individuals to donate samples to the Mayo Clinic’s international biorepository, AMMF was asked to help locate...
Read MoreCancer52’s briefing paper on Orphan Medicines
Cancer52, the alliance of rare and less common cancer charities of which AMMF is an active member, has published a briefing paper on Access to Orphan Medicines in the UK, today 5th June 2014. More deliberation and less maths - Making reasonable decisions about access to orphan medicines in the UK In summary: Orphan medicines treat diseases that affect no more than 5 in 10,000 people in Europe. Ultra-orp...
Read MoreImmune cell therapy – the answer to CC?
There’s been a huge amount of press coverage over the last week about the work of researchers at the US National Cancer Institute and the success they have achieved in harnessing a person’s own immune system to fight cancer. Of great interest to all of us, of course, was that the patient who received this treatment had an advanced cholangiocarcinoma, which had spread to her liver and lungs, despite un...
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