There are lots of organisations, support groups, books, videos and other resources to help you cope with acute lymphoblastic leukaemia (ALL) and its treatment.
The information on this page lists some of the organisations that can help you cope. And some books and videos that other people have found helpful.
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 us a question online.
Cancer Chat is our online forum where you can share experiences.
Leukaemia support organisations and sites
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.
Nurse or support team number: Freephone 08088 010 444 opening times are:
- Monday 9am to 5pm
- Tuesday and Wednesday 9:15am to 2:15pm
- Thursday 9:15am to 2:15pm and 7pm to 10pm
- Friday 7pm to 10pm
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: 0208 374 4821
Bpositive is a charity that provides support and information for those affected by acute leukaemia. They have an online community that you can join, as well as providing podcasts called Bpositive bloodstream that you can listen to.
Blood and bone marrow organisations
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
The NHS Blood and Transplant service runs the blood donation scheme and organises the supply of blood products. They also run the British Bone Marrow Register (BBMR). The BBRM helps find people stem cell matches.
Telephone: 0300 123 23 23
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.
Phone: 020 8747 5620
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
General support organisations
Macmillan Cancer Support provides practical, medical and financial support, and campaigns for better cancer care. It provides booklets on cancer and treatments and runs a helpline providing cancer information and benefits advice.
Macmillan support line: 0808 808 0000 (7 days a week, 8am to 8pm; information available in other languages) or fill in the support line form.
Young Lives vs Cancer (previously called CLIC Sargent) is a charity that provides clinical, practical, financial and emotional support for children and young people and their families who are affected by cancer.
Phone: 0300 330 0803
Teenage Cancer Trust is a national charity providing specialist units, expert staff, support events, education and information for 13-24 year old’s diagnosed with cancer, and their friends and families.
Teenage Cancer Trust also work closely with healthcare professionals and researchers to lead the way on developing cancer care for teenagers and young adults.
Teenage Cancer Trust
93 Newman Street
Phone: 020 7612 0370
The National Cancer Institute is an American organisation specialising in cancer information and research.
This website has patient information about acute lymphoblastic leukaemia (ALL). As it is an American site, some of the information won't be relevant for a UK audience.
Books about ALL
ED Ball and A Kagan
Jones and Bartlett Publishers, 2013
An American book written by a patient and a doctor. It provides clear information about the treatment for leukaemia and covers areas such as quality of life. As it is American, some of the information may not be relevant to a UK audience.
T Mughal and J Goldman
Co-written by a leukaemia specialist, this book is intended for patients and relatives, as well as GP’s and other health workers. It covers the causes and treatment of leukaemias.
This is a book for younger readers. It was produced with Leukaemia and Lymphoma Research (now Bloodwise). It addresses both successful treatment and the possibility of dying from leukaemia.
K Chilman-Blair and J Taddeo
Medikidz Publishing, 2010
A comic style book aimed at children aged 8 to 15. You join Richard on his tour of the human body as he learns about leukaemia and its treatment and side effects.
Recommending a book
Contact us if you would like to recommend a book that you have found helpful. It helps us if you include the title, author, publisher's name and year, and ISBN number.
Booklets and factsheets
Here is a list of some of the booklets from Macmillan Cancer Support. But they also have other resources such as factsheets and audiotapes.
- Talking with someone who has cancer
- Understanding acute lymphoblastic leukaemia
- Understanding stem cell transplants using donor cells (allogeneic)
- Understanding chemotherapy
- Understanding cancer research trials (clinical trials)
- Understanding radiotherapy
- Talking to children when an adult has cancer
- Talking about your cancer
- Coping with hair loss
- Help with the cost of cancer
- Your feelings after cancer treatment
Here is some of the booklets and factsheets from Blood Cancer UK
- Acute Lymphoblastic Leukaemia (ALL)
- Blood stem cell and bone marrow transplants: the seven steps booklet and download
- Eating well with neutropenia
Booklets and factsheets from Anthony Nolan
Here is some of the booklets and factsheets from Anthony Nolan.
- Essential Facts for Transplant Patients
- Life After Transplant: An Essential Guide to Graft Versus Host Disease (GvHD)
- Managing fatigue after a stem cell transplant
- Preparing for isolation
- Essential Facts for Transplant Recovery
Videos of people's stories
Find out about the experience of living with and beyond cancer by seeing and hearing people share their personal stories on film. Healthtalk’s researchers created a library of interviews with people who have survived for 5 years or more after a cancer diagnosis.
Find out what people said about issues such as lifestyle choices, physical effects and the impact on work and family.
Find local cancer support and information services
NHS website has a service that tells you about local information and support.