Dr Lawrence Foley, Future Academies chief executive, has completed two half marathons, raising vital funding for charities close to his heart. This article will look at the work of AMMF, an organisation created to support people diagnosed with bile duct cancer, a rare form of cancer that sadly claimed the life of Dr Foley’s mother-in-law.
AMMF is the UK’s only charity dedicated to supporting people with cholangiocarcinoma and their families. Working throughout the UK and Europe and collaborating globally, AMMF was founded to:
- Raise awareness of cholangiocarcinoma
- Provide information to those who need it
- Encourage and support specialised research into cholangiocarcinoma and its causes
- Pave the way for development of improved diagnostics and more effective treatments
- Advocate the patients’ viewpoint in national and global fora
Although rare, cholangiocarcinoma is the second leading type of primary liver cancer. Notoriously challenging to diagnose accurately, by the time of diagnosis cholangiocarcinoma is often too advanced for surgery, which is currently the only known cure.
Data collected from western countries indicates that both incidence and mortality rates of cholangiocarcinoma are on the rise. In England alone, cholangiocarcinoma caused 2,754 deaths in 2019, a figure consistence with findings in Canada and the US.
This parallel increase in mortality rates suggests a ‘true’ increase rather than simply reflecting improvements in diagnostic testing and imaging. Although the disease predominantly affects individuals aged 60 and over, incidences across all age groups, including younger people, appear to be rising. The reason for this is currently unknown.
In 2002, when AMMF was founded, it was the only charity dedicated solely to cholangiocarcinoma in the world. Today, the charity remains the only cholangiocarcinoma charity in the UK, working nationally and across Europe and collaborating globally.
The AMMF is proud to collaborate with numerous like-minded organisations globally, including:
- The British Liver Trust
- Cancer Research UK
- The British Society of Gastroenterology
- The British Association for the Study of the Liver
- European Liver Patients’ Association
- TargetCancer Foundation
- Cholangiocarcinoma Foundation of Thailand
- European Cancer Patient Coalition
- Rare Disease Europe
- Rare Disease UK
- The European Society of Medical Oncology
- Macmillan
AMMF provides support and information to people who need it, as well as campaigning to increase awareness of this devastating disease. AMMF also implements and supports specialised research in line with its mission to pave the way for development of more effective diagnostic techniques and treatment, with the ultimate goal of developing a cure for cholangiocarcinoma.
The global increase in cholangiocarcinoma is affecting individuals across all age groups. With the reason for this increase as yet unknown, there is an urgent need for more research into the disease and its causes.
AMMF is an active member of numerous organisations, including:
- Cancer52
- Cholangiocarcinoma-UK
- NCRI (National Cancer Research Institute) BTC Trial Management Group
- NCRI Upper GI Cancers and Hepatobiliary Group
- European Network for the Study of Cholangiocarcinoma
- Global Cholangiocarcinoma Alliance
- The International Biliary Tract Cancer Collaborators Group
- ECPC Working Group on Rare Cancers
The AMMF’s Rethink Liver Cancer campaign highlighted cholangiocarcinoma as a common type of liver cancer. Incidence of the cholangiocarcinoma is almost equal to hepatocellular carcinoma, a disease that is far more widely known. Recognising cholangiocarcinoma as a form of liver cancer is vital in terms of providing a reference point for health professionals, policymakers and the wider public, highlighting the need to tackle the growing threat posed by cholangiocarcinoma, a disease with one of the lowest survival rates of any cancer type.
AMMF is committed to raising awareness and understanding of cholangiocarcinoma, particularly among healthcare professionals, paving the way for earlier diagnosis and enabling patients to receive the early interventions they need to beat this rare but life-threatening type of cancer.
