Resources and support organisations for people with hairy cell leukaemia
There are organisations, support groups, audiobooks, videos and other resources to help you cope with hairy cell leukaemia and its treatment.
Cancer Research UK information and support
Cancer Research UK is the largest cancer research organisation in the world outside the USA. We fund research on all aspects of cancer from its causes to prevention and treatment.
We are committed to producing high quality information for people affected by cancer. As well as looking at the information on this website you can call our nurse freephone helpline on 0808 800 4040. They are available from Monday to Friday, 9am to 5pm. Or you can send them a question online.
Cancer Chat is our online forum where you can share experiences.
Leukaemia support organisations
Blood Cancer UK funds research into leukaemia, lymphoma and myeloma. It also provides patient information booklets and leaflets that you can download or order from their website.
Support line: 0808 2080 888
Email address: support@bloodcancer.org.uk
The CLL Support Organisation provides information and support to people with chronic lymphocytic leukaemia and their carers. It also promotes research into the treatment of CLL.
Tel: 0800 977 4396
The Leukaemia Cancer Society is a charity that provides information, support and has a befriending service. It's also involved in organising events to recruit donors for the stem cell registry, fundraising for research and raising awareness of blood cancers.
Support line: 0203 686 5303
Email address: enquiries@leukaemiacancersociety.org
Leukaemia Care is a national blood cancer support charity, committed to ensuring that anyone affected by blood cancer receives the right information, advice and support.
It provides a range of support services to patients and their carers, including information, support groups, patient and carer conferences, and nurse education days.
Freephone helpline: 08088 010 444
Chat via WhatsApp on 07500068065
Blood and bone marrow organisations
The African Caribbean Leukaemia Trust (ACLT) aims to increase the number of bone marrow and stem cells donors from all ethnicities, with a focus on African and Caribbean people in the UK who need a transplant.
Tel: 020 3757 7700
Anthony Nolan runs one of the largest bone marrow donor databases in the world. It has regional centres which are listed on its website. It also provides information about being a stem cell or bone marrow donor.
It is looking for people in good health aged 16–30 to join the Anthony Nolan register. In particular, they need more young men and people from black and minority ethnic communities to sign up.
General enquiries: 0303 303 0303, open Monday to Friday 9am to 5pm
Email: patientinfo@anthonynolan.org
DKMS used to be called Delete Blood Cancer. It aims to provide a matching donor for every blood cancer patient in need of a blood stem cell donation. It has offices in the UK, Germany, Chile, Poland, India, Africa and the United States.
People between the ages of 18 to 55 and are in general good health can join the register.
Email: info@dkms.org.uk
Phone: 020 8747 5620
The National Blood Service runs the blood donation scheme and organises the supply of blood products. They also run the British Bone Marrow Register. People aged between 17 and 40 can join the register. Let the staff know you are interested in being a stem cell or bone marrow donor when you next donate blood.
Phone the number below or look at the website for more information about becoming a blood stem cell or bone marrow donor.
Tel: 0300 123 2323
Other support and information organisations
Macmillan Cancer Support is a charity that gives practical, medical and financial support to people with cancer in the UK. Its helpline gives guidance on cancer and advice on benefits. It also publishes booklets about cancer and treatments. Information is available in other languages.
Freephone: 0808 808 00 00 (7 days a week, 8am to 8pm)
Contact email form
Maggie’s is a national charity with centres across the UK. They offer care and support to people affected by cancer. Each centre is beside an NHS cancer hospital and is run by specialist staff.
You can join a support group, take part in weekly sessions like relaxation and stress management, or learn about nutrition and health. You can also visit just to have a cup of tea and a friendly chat.
Phone: 0300 123 1801
Email: enquiries@maggies.org
The National Cancer Institute (NCI) is the US organisation for cancer research. It has information about all types of cancer.
Booklets, CDs and factsheets from other organisations
- Healthy eating and cancer
- Lost for words – how to talk to someone with cancer
- Sexuality and cancer
- Understanding chemotherapy (also on CD)
- Understanding cancer research trials (clinical trials)
- Talking to children and teenagers when an adult has cancer (also on CD)
- Talking about your cancer
- Hairy Cell Leukaemia (HCL)
- Newly diagnosed with a blood cancer
- Watch and wait – monitoring while treatment is not necessary
Healthtalk.org
Provides free, reliable information about health issues including mental health, by sharing people's real-life experiences.
Find local cancer information and support near you
There are organisations and support in your local area that you can access. You can ask your specialist nurse or doctor for more information about cancer services near you.
England
The NHS website has a service that tells you about local information and support in England.
Scotland
NHS Inform gives information about illness, treatments and NHS services for people in Scotland.
Wales
NHS 111 Wales gives health advice and information for people living in Wales.
Northern Ireland
The Northern Ireland Cancer Network (NICaN) website tells you where to find cancer information and support in Northern Ireland.
