Resources and support for people with non-Hodgkin lymphoma
Organisations, support groups and books can help you cope with non-Hodgkin lymphoma (NHL).
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.
Lymphoma support organisations
Lymphoma Action provides information and support for people affected by lymphoma. They provide a helpline service. They also offer online support meetings and a buddy service for putting patients in touch with each other. They run educational events and webinars.
They have a website which includes a database of lymphoma clinical trials.
Telephone for support or information: 0808 808 5555 (10 am to 3 pm Monday to Friday)
Telephone for general enquires: 01296 619 400
Email: information@lymphoma-action.org.uk
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 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
NHS Blood and Transplant
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
The US National Cancer Institute (NCI) website includes comprehensive guidance on treatment for non-Hodgkin lymphoma in adults and children.
This UK group gives information and support to people affected by Waldenstrom's Macroglobulinaemia. Their volunteers can answer questions about their experience of specific treatments.
This UK group is supported by the International Waldenstrom's Macroglobulinaemia Foundation (IWMF).
General support and resources
Teenage Cancer Trust is a national charity providing specialist units, expert staff, support events, education and information for 13 to 24 year olds 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
The Place
175 High Holborn
London
WC1V 7AA
Phone: 020 7612 0370 Monday to Friday 9am to 5pm
Email: hello@teenagecancertrust.org
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
We also have a longer list of general books and organisations that may be useful.
Books about cancer
Jeffrey Tobias
Bloomsbury Publishing PLC, 2001
ISBN 978-0747554103
This book covers treatment, side effects and many different types of cancer.
Elizabeth M Adler
Johns Hopkins University Press, 2016
ISBN: 978-0801881800
This US book was written by a doctor diagnosed with lymphoma. It covers the emotional, practical, physical and medical aspects of lymphoma. Some aspects may not apply to UK patients.
Lance Armstrong Foundation
Hodder & Stoughton, 2011
ASIN B005ZTC04U
An inspiring collection of personal stories about cancer and survivorship. It covers all aspects of cancer.
Recommend a book
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Booklets and factsheets
Lymphoma Action
Lymphoma Action publishes many booklets and information sheets, which can be ordered or downloaded for free from their website. They cover low and high grade non-Hodgkin lymphomas and much more.
Macmillan Cancer Support
You can download (for free) or order many factsheets and leaflets about various aspects of living with cancer and its treatment.
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.
