AMMF has a private space on Facebook for all whose lives have been touched by cholangiocarcinoma to share their concerns, information, knowledge and friendship with the cholangiocarcinoma family throughout the UK and Europe, and across the globe.
AMMF’s patient only support group on Facebook is a peer support group for patients, offering a safe, private and informal space for people to talk, gain advice and understanding from each other. If you live in the UK and Europe, you can request to join so that you can connect with other people affected by cholangiocarcinoma.
Cost of Living Crisis
Whilst we’re all feeling the pinch with the cost of living, it can be an even more stressful time for our patients and families. If you’re currently worried about making ends meet whilst getting treatment for cholangiocarcinoma, the following links may be helpful:
Listed below are UK organisations and web-based resources for patients, families and caregivers that may be helpful.
The British Liver Trust
The British Liver Trust is a national charity working to reduce the impact of liver disease in the UK through support, information and research.
Look Good Feel Better
Helping to support women with cancer by offering free expert workshops and advice on appearance-related topics such as skincare, make-up, wig selection and styling, scarf tying, nail care.
Macmillan Cancer Relief
Provides expert information with practical and emotional support.
With locations planned across the UK, Maggie’s Centre is a place to turn to for free help with any of the problems, small or large, associated with cancer.
Marie Curie Cancer Care
The UK’s most comprehensive cancer care charity.
Penny Brohn Cancer Care
(Formerly The Bristol Cancer Help Centre) Leaders in the field of holistic cancer care. This organisation offers a wealth of information to those with cancer, and to those who support them, including counselling, healing, relaxation, and nutrition advice.
PSC (Primary Sclerosing Cholangitis) is a rare autoimmune disease of the bile ducts with no known cure. It is also one of the known risk factors for cholangiocarcinoma. 8% – 30% of adults with PSC will develop this cancer. PSC Support offers help to anyone affected by PSC via their informative website, email or phone.
BME Cancer Communities (BMECC)
BME Cancer Communities aims to preserve and protect the health of people in particular but not exclusively from Black and Minority Ethnic (BME) and low-income communities living with or affected by cancer.
Trekstock provides a community to people in their 20s or 30s who’ve been diagnosed with cancer. Whatever type, whatever stage, they’ll help get you moving, get connected and create the life you want beyond your diagnosis.
OUTpatients are a UK-based LGBTIQ+ Cancer Charity. They are here to shake up the system, advocate for equity, and stand up for every LGBTIQ+ individual navigating the cancer journey. They host peer support, educate healthcare professionals, and help to shape national policy that supports the community.
Gift of a Wedding
Gift of a Wedding is a charity which hopes to bring joy, love and happiness to those with a terminal or life-shortening illness by gifting weddings and vow renewals. Their aim is to create a no-fuss, central focal point for people with a terminal or life-shortening illness who wish to marry.
Sensitive Information: Dying and Bereavement
Please note the information provided is sensitive and may be distressing to some.
AMMF has provided an area with information to help patients, their families and friends have a better understanding of the issues surrounding a very difficult time, and with links to organisations who can offer specific help and support.
To access this area, click here
For details of companies able to supply travel insurance to those with a serious or terminal diagnosis, please click here.
AMMF has no relationship with any of the organisations listed here, other than the reciprocal imparting of information. Links are provided for information only.
COVID-19 Helpful Links
For updated information on COVID-19, please refer to:
Advice for the public from the WHO: click here
Advice on travel: https://www.gov.uk/travel-abroad