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Links
These are links to other sites likely to be of interest to people with rarer cancers.
We'll be adding new links on an ongoing basis and are in the process of gathering information and as many links as we can to sites related to rarer cancers.
Please feel free to send us your information.
The more we share information, the better the service those with a rarer cancer will receive.
Website disclaimer
Click here to read an important disclaimer
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AMMF (Alan Morement Memorial Fund)
Registered UK charity that aims to raise funds for research into cancer, particularly into the causes, treatments and cures for cancers of the gastrointestinal tract and especially cholangiocarcinoma.
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Adam's Hats
The charity aims to improve outcomes for children with the exceptionally rare cancer, neuroblastoma, and their families.
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Asbestos Support West Midlands
Offers help and advice to people, and their families, who are suffering from asbestos related diseases such as mesothelioma and asbestos related lung cancer.
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BestTreatments
This is a health website for patients and their carers which has in-depth information on all major chronic conditions. It has a section on cancers which includes information on some relatively rarer types. It tells you which treatments work and which don't, based on the best and most up to date research evidence.
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Bonetumor.org
Offers comprehensive information about bone tumours.
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Brain Tumour (BT) Buddies
Aims to provide as much information as possible in one place on high grade brain tumours for patients, families and caregivers in the UK. Also has a forum area where people can ask questions, get support and share their stories.
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Brain Tumour Foundation
Provides information and support to people diagnosed with a brain tumour, their families and professionals working in the field of brain tumours.
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Brain Tumour UK
Works to conquer brain tumours through research, education and support.
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Butterfly North East
Registered UK charity solely dedicated to the support of patients with thyroid cancer.
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CORE
Provides information about digestive disorders (including cancers) for patients and their families and friends.
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Cancer Black Care
Provides information, advice and support services for cancer patients and their families, which is sensitive to cultural and ethnic diversity.
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Cancer Campaigning Group (CCG)
A coalition of national cancer charities dedicated to improving cancer policy and services across the four areas of prevention, care and treatment, patient involvement and choice, and research.
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Cancer Counselling Trust
Provides face-to-face and telephone counselling for cancer patients, their families, friends and care givers who seek counselling to help them through the difficult issues associated with a cancer diagnosis.
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Cancer Network Voice
Website of 3 Counties Cancer Network. Designed to keep people affected by cancer informed
about meetings, events and local and national updates.
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Cancer Voices
This is a UK-wide network of people affected by cancer who are helping to shape the future of cancer care. Supported by Macmillan Cancer Support.
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CancerHelp UK - Gall bladder cancer
This patient information website of Cancer Research UK gives information about gallbladder cancer (also called cholangiocarcinoma). Includes symptoms, diagnosis, treatment,
follow-up and living with cancer.
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CancerHelp UK - Vaginal cancer
This patient information website of Cancer Research UK gives information about vaginal cancer. Includes symptoms, diagnosis, treatment, follow-up and living with cancer.
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CancerHelp UK - Vulval cancer
This patient information website of Cancer Research UK gives information about vulval cancer. Includes symptoms, diagnosis, treatment, follow-up and living with cancer.
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CancerWEB
Has information on many different aspects of cancer, investigation and treatment.
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Cancerbackup
Cancerbackup, Europe's leading cancer information service, with over 4,500 pages of up-to-date cancer information, practical advice and support for cancer patients, their families and carers.
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Carers UK
A charity set up by carers to improve the lives of carers.
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Channel 4's Healthcare Lottery database
This database allows people to discover if they are victims of the NHS postcode lottery and empowers them to challenge the decisions taken by their Primary Care Trusts.
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Childhood Eye Cancer Trust
UK wide charity for families and individuals affected by retinoblastoma. Offers support and information, funds research and raises public awareness of this rare cancer.
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Children with Leukaemia
UK charity dedicated to research and treatment of childhood leukaemia, and to the welfare of leukaemic children and their families.
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Cholangiocarcinoma Foundation
Although based in the US the site has members from around the world - many from the UK. The forum is a wonderful place for information and support for people with bile duct cancer.
www.cholangiocarcinoma.org
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Chordoma Support Group
An international, online support group for all those affected by
chordoma, a rare form of skull and spinal disease.
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Cochrane Cancer Network
Aim is to facilitate the preparation, maintenance and dissemination of Cochrane systematic reviews in cancer, addressing the information needs of cancer patients, clinical practitioners and researchers.
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Contact a Family
Provides advice, information and support to the parents of all disabled children, including those who have cancer.
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Counselling Directory
A support network of UK counsellors and psychotherapists, with information on their training and experience, areas of counselling covered, fees and contact details.
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Directgov
Includes a range of information for disabled people.
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European Cancer Patient Coalition (ECPC)
Established to represent the views of cancer patients in the European healthcare debate and to provide a forum for European cancer patients to exchange information and share best practice experiences.
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Facefax
Information, support and encouragement for patients with face, neck and mouth cancers, and for their friends, relatives and carers.
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GIST Support International
Dedicated to the support of GIST patients, families, and friends and the ongoing research required to treat and cure Gastrointestinal Stromal Tumours.
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GIST Support UK
Site for patients with Gastro Intestinal Stromal Tumour (GIST) and their supporters to share experiences.
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Gorlin Syndrome Group
Provides information about Gorlin Syndrome and promotes research into its causes, effects and management.
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Gynae C
Aims to support women with any form of gynaecological cancer, their partner, family and friends.
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H.E.A.R.D.
Support group to help people who have Hemangioendothelioma (HE), Epithelioid Hemangioendothelioma (EHE), And Related vascular Disorders. Also maintains the International H.E.A.R.D. Registry, which records a brief medical history for each member.
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Humberside Oesophageal Support Group
Local UK organisation that aims to help people with oesophageal problems find information, and read about how other patients cope with their problems.
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International Brain Tumour Alliance
Seeks to be an alliance of support, advocacy and information groups for brain tumour patients and carers in different countries and also includes researchers, scientists, clinicians and allied health professionals who work in the area of brain tumours.
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International Waldenstrom's Macroglobulinemia Foundation
The purpose of the Foundation is to provide information, resources, a communications network, and experience on how to live with Waldenstrom's Macroglobulinaemia (WM), plus encouragement to those affected by this rare and incurable blood cancer.
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Intute
Intute is a free online service providing you with access to the very best Web resources for education and research, selected and evaluated by a network of subject specialists. The service is brought to you by a consortium of UK universities and partners.
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Irish Cancer Society
National charity dedicated to preventing cancer, saving lives from cancer and improving the quality of life of those living with cancer through patient care, research and education.
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Jo's Trust
Provides information, confidential medical advice, counselling and support about all aspects of cervical cancer.
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Lymphoma Association
Provides emotional support and information to anyone with lymphatic cancer and to their families, carers and friends.
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MDS UK Patient Support Group
Provides continuous support to MDS patients and their carers; advances public education in all aspects of MDS in the UK, through publications and the internet; promotes and supports scientific research into the treatment and care of MDS patients; provides a vehicle for networking between sufferers and carers.
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Macmillan Cancer Support
Macmillan Cancer Support helps people who are living with cancer. Macmillan makes a real difference to the lives of people living with cancer, their families, friends and carers.
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Macmillan Cancer Voices
This is a UK-wide network that helps people who have or have had cancer, their loved ones and carers to speak out about their experience of cancer.
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Maggie's Centres
Maggie's Centres are for anybody who has, or who has had cancer. They are also for their families, their friends and their carers. The friendly environment of the centres, close in each case to a major cancer hospital treatment centre, invites people to take time out and gives them a non-institutional place they can call their own.
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Marie Curie Cancer Care
UK charity that provides Marie Curie Nurses, 10 hospices, the Marie Curie Research Institute and Palliative Care research.
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Medicine Guides
Online resource providing patients and the general public with information about UK-licensed medicines.
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Meningioma UK
National support group dedicated to giving help and information to people diagnosed with this type of brain or spinal tumour.
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Merseyside Regional Head and Neck Cancer Centre
Provides information (of local and more general relevance) for patients and carers. Also contains information for referring practitioners and other health care professionals involved in the management of head and neck cancer.
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NET Patient Foundation
Registered charity that supports patients with all types of neuroendocrine tumours (NETs), providing up to date information and advice, a patient forum, support groups and a support telephone line.
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NHS Cancer Programme for England
Provides links to some of the major areas of work and services for patients, the general public, NHS staff and other healthcare professionals involved in cancer care.
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Orchid Cancer Appeal
Dedicated to funding research into diagnosis, prevention and treatment of prostate and testicular cancer as well as promoting awareness of these diseases.
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Ovacome
UK-wide support network providing information and support for everyone affected by ovarian cancer.
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Pancreatic Cancer Research Fund
Registered UK charity dedicated to helping overcome pancreatic cancer by raising awareness and funds for research into its detection and treatment.
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Pancreatic Cancer UK
National charity dedicated to combatting pancreatic cancer through research and awareness.
Provides a central resource of information on pancreatic cancer to patients, caregivers and GPs and a support network for patients, their families and friends.
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Patient UK
Provides information about a range of cancers.
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People living with cancer
Patient information website of the American Society of Clinical Oncology. Includes information about many different cancer types.
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RT Answers
US site provided by American Society for Therapeutic Radiology and Oncology. Offers answers to radiation therapy questions.
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SDBTT Astro Fund
Raises funds for research and to offer support to patients and carers affected by low-grade gliomas.
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Samantha Dickson Brain Tumour Trust
Exists to find a cure for childhood and adult brain tumours through funding research and to offer support, hope and information to patients and their carers.
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Sarcoma UK
Offers information which is intended to help patients, carers and families understand more about the different kinds of sarcoma.
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Skinship (UK)
UK charity with helpline for people with skin problems that is run by a person with a rare skin cancer - mycosis fungoides.
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Tak Tent
Scottish charity providing information and advice for people with cancer and their families. Also provides counselling and complementary therapies for everyone on the cancer journey.
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Teenage Cancer Trust
Focuses on the needs of teenagers and young adults with cancer by providing dedicated teenage units in NHS hospitals.
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Tenovus
A charitable organisation committed to the control of cancer through quality research, prevention/education, counselling and patient care.
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Thyroid Cancer Forum UK
National organisation that facilitates communication between doctors and scientists working in the thyroid cancer field. Also provides general information on thyroid cancer.
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Ulster Cancer Foundation
Charity that exists to help patients and their families cope with cancer, research new and better treatments for cancer and prevent cancer in Northern Ireland.
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Cancer moves to top of health agenda
Wed, 10 Mar 2010
Recent meeting across the political divide agree NICE process needs to be sped up and recognizes the need for more detailed patient information
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URGENT request for your help!
Wed, 13 Jan 2010
We are putting together a series of booklets called "Patient Experiences" and are seeking patients to fill in a short questionnaire.
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NCRI Clinical Studies Group
Tue, 12 Jan 2010
The National Cancer Research Network is recruiting patients and members of the public to join their NCRI Clinical Studies Groups.
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