AMMF News

GP Awareness Campaign to continue …

With the incidence of cholangiocarcinoma (CC) markedly increasing and many younger people now being affected, it is vital that GPs are made aware of the existence of this disease, its symptoms and that, most importantly, time is of the essence in achieving a diagnosis so that the patient has the best possible chance of life saving surgery. During Cholangiocarcinoma Awareness Month this year, (February 20...

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Cancer52’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...

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Immune 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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Canopies UK Choose AMMF

We are delighted to report that Canopies UK, the UK's leading supplier of outdoor canopies, has chosen AMMF as their charity to support. Jason Eastwood, Sales Director at Canopies UK, said “We’ve been discussing supporting a charity for some time, and I’m glad to say it was a unanimous decision - we would like to support AMMF.” Since losing his wife, Kelly, to cholangiocarcinoma in 2011, Jason a...

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Viewpoint from Thailand

The incidence of cholangiocarcinoma is increasing, not only in the UK but throughout the world - it is a global problem.  Following the recent 3-day  international cholangiocarcinoma workshop in Thailand* where perspectives and experiences on CC amongst UK and Thai researchers were shared and opportunities for new and potential research were discussed, AMMF has formed links with researchers and special...

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Trinity College report on AMMF’s Dublin visit

Trinity College School of Medicine reports on AMMF's visit to Dublin Just before Christmas 2013, AMMF's Helen Morement and trustee Harry Corrigan were delighted to be invited to visit St Luke's Hospital in Dublin to meet Dr Charles Gillham and members of his team, and to receive a generous donation of 10,000 euros, raised for the charity in memory of Professor Donal Hollywood, their much loved and es...

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ILCA International CC Guidelines

International "Guidelines for the diagnosis and management of intrahepatic cholangiocarcinoma" In 2012, The International Liver Cancer Association (ILCA) decided to produce their first ever International Guidelines on liver cancer and chose to do this on cholangiocarcinoma. An international panel of CC specialists* from five countries, including Dr Shahid Khan and Dr John Bridgewater from the UK, collab...

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CC Awareness Month 2014 Guest Posts

Once again this year we had a fantastic response to our Facebook Daily Guest Post feature during February, Cholangiocarcinoma Awareness Month.   And what incredible posts they were – telling of love, courage and support, of so many people lost to this ruthless disease, and of the appalling lack of knowledge there is of CC. The Guest Post feature attracted an enormous amount of attention, and many sup...

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AMMF & the Thai CC Workshop

Cholangiocarcinoma Workshop - Khon Kaen, Thailand AMMF's Helen Morement has been invited to present the work of the charity at the Thai workshop, supported by the British Council and the Thailand Research Fund and organised by the Faculty of Medicine, Khon Kaen University, "Cholangiocarcinoma: Shared disease burden in the UK and Southeast Asia", which is being held in Khon Kaen, Thailand, between March 12t...

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AMMF & Cancer52

AMMF's Helen Morement is appointed to the board of Cancer52 For several years, AMMF has been an active member of Cancer52* – the umbrella organization providing “the common voice for less common cancers”, working together to address the inequalities that exist in policy, services and research, and to improve outcomes for patients with these highly challenging diseases. Through Cancer52, AMMF has ...

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AMMF’s Newsletter just out!

Time for an update ... It’s been two years since AMMF's last newsletter, so more than time for an update! In reviewing the last two years for the newsletter, successful would seem an odd word to use when we are concerned with such a devastating disease as cholangiocarcinoma, yet we have seen success and improvement in almost every area – awareness, diagnosis, treatments.  Still a hard road to trave...

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Golden Fundraisers

Beryl and Bill Jones celebrated their Golden Wedding Anniversary on 16 December 2013 - and it was a very special and remarkable one in more ways than the obvious! Six years ago Beryl was diagnosed with cholangiocarcinoma - it was at an early stage, so she was able to have life saving surgery and return to living life to the full. With their milestone anniversary approaching, Beryl and husband Bill decide...

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AMMF’s external activities – a year end summary

AMMF is now recognised nationally and is rapidly becoming the 'go to' organisation for cholangiocarcinoma (CC), both amongst the general public and within medical circles.  For some time now, AMMF has appeared on the NHS Choices website and, earlier in 2013, the charity took part in both the NHS services commissioning review for HPB cancers, and in the NCPR (National Cancer Peer Review) consultations rega...

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NCRI & Cancer52 research spend report published

A new report from the National Cancer Research Institute (NCRI) and Cancer52, 'Research into less common cancers’ was published today, 4th November 2013.  This shows, for the first time, the level and type of research investment in rare and less common cancers by members of Cancer52. AMMF, as an active member of Cancer52, was one of the twenty-five charities who participated by submitting data for an...

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Cancer52 Annual Briefing

AMMF is an active member of Cancer52,  an alliance of those organisations representing the rarer and less common cancers, working together to address the inequalities that exist in policy, services and research, and to improve outcomes for patients with these highly challenging diseases. Formed at the request of the then National Cancer Director, Professor Sir Mike Richards, to input into the Cancer Ref...

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Jake’s campaign expands …

Earlier this year, Jake Bishop lost his much loved grandfather, Adam Reay, to cholangiocarcinoma just a month after diagnosis. This was a great shock to the family because, as Jake explains, “There was almost no sign that he was ill and he was still an active and caring grandfather.” Since then, and despite his young age, Jake has been determined to raise the awareness of cholangiocarcinoma and to ra...

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Saatchi Bill moves to full consultation (22.11.13)

Lord Saatchi's Medical Innovation Bill moves to full consultation On Friday, 22 November, 2013, the Government  agreed to full consultation on the Saatchi Bill.   The Bill has won the backing of Health Secretary Jeremy Hunt, who said it had the power to 'lead to major breakthroughs, such as a cure for cancer.' In his statement Mr Hunt said, 'It is precisely because this issue is so important, bec...

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CRUK Your Day, Your Say

By Helen Morement Cancer Research UK are holding 'Your Say, Your Day' events on 6th September 2013 across the UK to inform those affected by cancer about their latest research, information and campaigns, and to let them know how they can help make a real difference. Researchers, nurses and members of the CRUK team will be available during the day, including over lunch, to talk to and share ideas with...

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Grant for AMMF from Law Firm’s Trust

AMMF is delighted to have received a grant of £1,000 from the Wright Hassall Charitable Trust, the charitable arm of Wright Hassall LLP. A well respected and experienced law firm based in Leamington Spa, Warwickshire, Wright Hassall LLP has the vision, “to be the best legal practice in the Midlands, nationally recognised for the quality of our work, the quality of our service and the quality of our ...

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Discovering the Aintree Attitude

by Helen Morement Through my work with the National Cancer Research Institute(1) Hepatobiliary Sub-Group where clinical trials are planned and discussed, I had already met Mr Hassan Malik(2) and Professor Dan Palmer(3) from Liverpool, and knew of their in depth knowledge and expertise with cholangiocarcinoma.  So I was very pleased when they invited me to Aintree Hospital, Liverpool to meet other memb...

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AMMF’s brochure – updated …

For the latest on the AMMF brochure please click here

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Towards a Thai Connection

by Helen Morement of AMMF For some while AMMF has been helping to support the collaborative research work between Imperial College London and Khon Kaen University Hospital, Thailand, so I was delighted and honoured to be invited by Professor Simon Taylor-Robinson* of Imperial College to meet a delegation of specialists from Khon Kaen on 6 June, and to have the opportunity to tell them about the work of AMM...

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RCF Patient Empowerment Day

The NHS mantra ‘no decision about me, without me’ was the theme of this, the first of the Rarer Cancers Foundation’s Patient Empowerment days, held in London, 03 June 2013. Andrew Wilson, Chairman of the Rarer Cancers Foundation set the scene and introduced the first speaker, Professor Martin Gore of the Royal Marsden NHS Trust. In a day designed to empower patients by explaining that they now h...

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The NHS Reforms explained …

At a recent Cancer52 meeting, Sasha Daly, Head of Policy at the Teenage Cancer Trust, gave a presentation on the reformed NHS England, what the structures are, how they link to each other and how they are mapped out both nationally and regionally. Sasha had clearly done her homework, as she did an excellent job of explaining the complex new reforms. Her explanatory visuals are amongst the clearest we hav...

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Imperial CC Research Update

AMMF visited Imperial College London on 21st March, at the invitation of Professor Simon Taylor-Robinson and Dr Shahid Khan, to meet the cholangiocarcinoma research team and to receive an update on the CC research work which is being undertaken there and which AMMF helps to fund. Our discussions were wide ranging and it is very obvious that cholangiocarcinoma is now well and truly on the map as far as re...

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