Our members are all organisations concerned with rare and less common cancers. Many of our members are very small: over half have an annual income below £200,000; many exist on incomes of only hundreds of pounds a year. Together we have a more powerful voice.
|The African Caribbean Leukaemia Trust (ACLT)
The African Caribbean Leukaemia Trust (ACLT) raises awareness of all blood cancers within the BME community and also promotes the need for this group to participate in joining the UK’s bone marrow register, become regular blood donors and register as organ donors. The ACLT is a charity which aims to increase the number of black, mixed race and ethnic minority people on UK registers of potential stem cell donors. The ACLT is committed to providing the most convenient, culturally sensitive and friendliest bone marrow/stem cell testing service to the BME community in the UK. Their mission is to develop an accessible, high quality bone marrow, blood and organ donation service for all people.
|Adam’s Hats (now part of CCLG)
The charity was established in 2003 with the aim of improving outcomes for children with the exceptionally rare cancer, neuroblastoma, and their families. Our role is to act as catalysts for better palliative care provision for everyone involved, and to stimulate international collaborative research. Together we can make a difference.
AMEND provides international information and support to anyone affected by multiple endocrine neoplasia (MEN) disorders and associated endocrine tumours and syndromes. We maintain a Research Registry and produce patient information resources with the help of our expert medical advisory team. Free patient support services include a counselling helpline, patient information books, telephone and email buddy scheme and regular patient information events. Membership is also completely free and open to all via our website.
|AMMF – The Cholangiocarcinoma Charity
AMMF (The Alan Morement Memorial Fund) is the UK’s only cholangiocarcinoma charity. Our objectives are to raise awareness, to impart information and to support specialised research teams working to find the causes, methods of earlier diagnosis and treatments for this devastating disease. (Cholangiocarcinoma – bile duct cancer.) Registered Charity No:1091915
|Barrett’s Oesophagus Foundation
The Barrett’s Oesophagus Foundation works to secure the long term future of the UK National Barrett’s Oesophagus Registry (UKBOR). Establish a patient support group for Barrett’s sufferers and their families. Fund research projects into the causes, prevention and treatment of Barrett’s oesophagus and oesophageal cancer.
|Bone Cancer Awarness Trust
The Bone Cancer Awareness Trust was set up by the family and friends of Luke Bradwell, who passed away on the 3rd January 2012 after a valiant fight with Osteosarcoma. We aim to raise awareness of bone cancer to promote early diagnosis, as this is one of the most important factors influencing outcome. Each year in the UK there are about 450 people who are diagnosed with a form of primary bone cancer. Primary bone cancer mainly affects children and young people between the ages of 10 – 24. We want people to be empowered with information on primary bone cancer, in the hope that late diagnosis becomes a thing of the past. The first aim of the Trust is to provide bone cancer information cards to GP surgeries. On completion, our second aim is to continue the awareness campaign by providing secondary schools with this important information. We hope increased awareness will encourage individuals to seek medical attention sooner, as we believe early diagnosis can save limbs and lives.
|Bone Cancer Research Trust (BCRT)
Our vision: ‘We want a world where lives are no longer limited by primary bone cancer’
The Bone Cancer Research Trust (BCRT) was set up in 2006 by a group of bereaved families with a common goal – to improve outcomes for people affected by primary bone cancer. We aim to achieve this through Research, Awareness, Information and Support.
About 450 young people are diagnosed with primary bone cancer each year in the UK and Ireland. The two most common types of primary bone cancer are osteosarcoma and Ewing’s sarcoma, which largely affect children and young people. The average age of diagnosis is 15. BCRT funds research into the causes and treatment of primary bone cancer, in order to improve outcomes for future bone cancer patients.
brainstrust is a UK based brain cancer charity, dedicated to improving clinical care for brain tumour sufferers and providing co-ordinated support in their search for treatment. We provide support and advice at the point of diagnosis and beyond, by updating treatment, improving care and, ultimately, saving lives.
|Brain Tumour Research
In the UK more children and people under the age of 40 die of a brain tumour than any other cancer. Brain Tumour Research aims to raise at least £7 million per annum to significantly accelerate progress in UK brain tumour research, making a clinical difference and improving patient outcomes.
|Brain Tumour UK
Brain Tumour UK aims to provide support and information to brain tumour patients, their families and carers; to promote and engage in research into the nature, causes, diagnosis and treatment of brain tumours; to increase awareness and advance the education of the public in all areas relating to brain tumours.
| British Lymphology Society
BLS members are healthcare professionals and others involved in the management of lymphoedema. Our main aims are to promote awareness of lymphoedema; to promote minimum standards in the treatment and care of patients, encouraging the provision of equitable and sustainable services;and to encourage participation in relevant research to advance and improve outcomes for patients.
|British Thyroid Foundation
The British Thyroid Foundation provides support for those with thyroid disorders and their families; provides information to those with thyroid disorders and to the medical profession; establishes regional support groups; and raises funds for research.
|Butterfly Thyroid Cancer Trust
The Butterfly Thyroid Cancer Trust provides support and information to people affected by thyroid cancer.
|Cancer Laryngectomee Trust The Cancer Laryngectomee Trust provides free help for sufferers of cancer of the larynx, people who have had a laryngectomy, and their carers.
|Cancer of Unknown Primary (CUP) Foundation – Jo’s friends
The Cancer of Unknown Primary Foundation exists to offer information and support to CUP patients, their families and friends; whilst raising awareness of this problem to stimulate action that will improve treatment.
The Children’s Cancer and Leukaemia Group (CCLG)was formed in 2006 as a result of the merger of the UK Children’s Cancer Study Group and the UK Childhood Leukaemia Working Party, both of which had been in existence since the 1970s.
The CCLG supports the 1,700 children who develop cancer each year in the UK and Ireland. As an association for all healthcare professionals involved in their care, it works to benefit children through development of the highest standards of care. Many activities contribute towards this goal: education, meetings, networking, liaison with governments and other bodies, information provision for families and healthcare professionals, and the promotion of research. Through a network of specialist centres, members aim to provide the best possible treatment for all children with cancer and leukaemia, wherever they live. The work of CCLG members over the last thirty years means that over 70% of children with cancer are now cured; but further carefully conducted clinical research is essential until every child can be cured without serious side effects.
CCLG – caring for children, curing their cancer.
|Childhood Eye Cancer Trust
The Childhood Eye Cancer Trust aims are: to provide information and support to individuals and families with retinoblastoma (Rb); to raise awareness of Rb; to raise funds for research; and to influence professional bodies to ensure optimum service for Rb patients.
|CHILDREN with CANCER UK
We are the leading national children’s charity dedicated to the fight against childhood leukaemia and other childhood cancers. Our aims are to determine the causes, find cures and provide care for children with cancer.
Formed in January 2005 through the merger of CLIC and Sargent Cancer Care, CLIC Sargent is the UK’s fourth largest cancer charity, and the authoritative campaigning voice on cancer care in children and young people.
|Chris Lucas Trust
Approximately 1,400 children diagnosed with cancer in the UK each year Chris Lucas Trust wishes your support to help beat one of the most horrific children’s cancers Rhabdomyosarcoma. We are fundraising to fund our Scientific Researcher and assistant in post. Our vital work solely relies upon your kind donations.
|Chronic Myeloid Leukaemia Support Group
The CML Support Group provides support and updated information regarding the best available therapy for CML patients in the UK, Europe and other regions of the world.
Core is the only charity in the UK that funds research into the entire range of gut, liver, intestinal and bowel illnesses. We have a major interest in providing patients with good, accurate information about their illness.
|GIST Support UK
GIST Support UK is a group of GIST (Gastro Intestinal Stromal Tumour) patients and their carers. The aims of the group are to support the members, to improve patient care, to encourage research, and to liase with the pharmaceutical industry and the government on GIST related issues.
GSUK provides information about GIST and living with GIST, for patients and medical professionals. It has an email chat line for patients and carers, a telephone help line, and a web site. It also holds two meetings a year for patients and carers, at which experts talk about different aspects of GIST. GSUK is affiliated with other GIST patient groups world-wide.
GSUK has a sub-group for the ultra-rare Paediatric, Adoclesent, Wild-type and Syndromic GIST patients, known as PAWS-GIST.
|Guy Francis Bone Cancer Research Fund
Founded by teenage Osteosarcoma patient Guy Francis shortly before his death in 2002, the Fund asks Why? primary bone cancer is Britain’s Number 1 Teenage Cancer. The Why Guy? campaign questions the Causes? Lifestyle? Environment? Detection? Treatment? & Survival? of bone cancer in teenagers & young adults. Guy’s Fund raises money for vital research into Osteosarcoma and Ewing’s Sarcoma; promotes awareness and education, particularly through its S.I.G.N.S™ Patient Checklist Initiative; advocates a “Patient Voice” ; and also campaigns for patients’ rights including important welfare reform for young people undergoing long term treatment programmes which may result in permanent physical disability.
|Heartburn Cancer Awareness & Support (HCAS)
Heartburn Cancer Awareness & Support (HCAS) is a charity dedicated to increase public and professional awareness of the significance of the common symptom of heartburn and its link to cancer of the oesophagus. Through a programme of education at a local, regional and national level we hope to make a significant impact on the early diagnosis and treatment of oesophageal cancer which is the most rapidly increasing cancer
|International Brain Tumour Alliance
The IBTA seeks to be an alliance of the 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.
|It’s in the Bag – Supporting Men with Testicular Cancer
It’s in the Bag is a collaboration between testicular cancer patients and The Bristol Testicular Cancer Service (BTCS) team predominantly focused on the South West. It is a self-funded group under the umbrella of Above & Beyond Charities, with the aims of raising awareness of testicular cancer and supporting both patients and survivors of the disease.
|Jo’s Cervical Cancer Trust
Jo’s Cervical Cancer Trust is the UK’s only charity dedicated to women, their families and friends affected by cervical abnormalities and cervical cancer. Our aim is to offer information, support and friendship through a range of services both online and face to face. Our mission is to see cervical cancer prevented, reduce the impact for everyone affected by cervical abnormalities and cervical cancer through providing the highest quality information and support services and campaigning for excellence in cervical cancer treatment and prevention.
|Kidney Cancer Support Network
The Kidney Cancer Support Network exists to help kidney cancer patients, families and friends join together and to offer information, advice and friendship to each other.
Leukaemia CARE exists to provide vital care and support to all thse whose lives are affected by leukaemia, lymphoma and the allied blood disorders. Our work extends to the welfare of families and carers, as well as that of the patients themselves.
|Leukaemia & Lymphoma Research
Leukaemia & Lymphoma Research is the only UK charity dedicated to improving the lives of patients with all types of blood cancer, including leukaemia, lymphoma and myeloma. We are focused on finding causes, improving diagnosis and treatments, and running ground-breaking clinical trials for all blood cancer patients.Leukaemia & Lymphoma Research first started research into blood cancers in 1960.
We are now leaders in our field and patients are benefiting from our ground-breaking research today – and in the future.
|Lymphoedema Support Network
The Lymphoedema Support Network (LSN) takes the lead role in educating and supporting other patients with this condition by providing a high standard of information and promoting self-help.
The Lymphoma Association provides emotional support and information on a range of issues to anyone with lymphatic cancer and to their families, carers and friends.
|Maggie’s Cancer Caring Centres (Maggie’s Centres)
The aim of Maggie’s Centres is to help people with cancer to be as healthy in mind and body as possible and enable them to make their own contribution to their medical treatment and recovery.
|MDS UK Patient Support Group
Myelodysplastic Syndromes (MDS) are a group of diverse bone marrow disorders in which the bone marrow does not produce enough healthy blood cells. It is often referred to as a “Bone marrow failure disorder”. It is primarily a disease of the elderly, with an average age of 74 at diagnosis. Some patients do succumb to the direct effects of the condition, due to reduced blood cell counts. 10% to 30% of MDS patients will progress to acute myeloid leukaemia (AML), depending on the degree of severity. 2000 to 3000 new patients are diagnosed each year with MDS.
MDS UK offers support, advice, and information to patients diagnosed with MDS – and their families; organises national and regional patient information meetings with specialist speakers; raises awareness of MDS amongst the general population, patients, carers, health care professionals and politicians across the UK.
MDS UK is the only organisation completely dedicated to MDS in the UK.
Melanoma Focus is a new charity with an active membership of more than 100 leading UK melanoma consultants, scientists and nurses. Based in Cambridge, this national charity is dedicated to providing comprehensive and authoritative information for public and professionals alike, as well as supporting education and promoting innovative research projects.
Melanoma Focus will also be participating in public health campaigns for the prevention of melanoma and the improvement of its detection at an early stage – a key factor that is often critical for a patient’s survival.
Around 12,800 people are diagnosed with melanoma in the UK every year and approximately 2,200 die of the disease. It is now the fastest rising cancer in men and women and affects more young adults than almost any other cancer.
We are the only national support group founded by and run by patients for patients affected by meningeal tumours. Dedicated to helping everyone affected by a brain or spinal cord meningioma, we are committed to raising awareness of this type of brain tumour and providing free support and information in clear, jargon-free English.
|Mouth Cancer Foundation
The main object of the Mouth Cancer Foundation is the relief of sickness and the promotion and protection of good health among those suffering or at risk of mouth, throat and other head and neck cancer by the collation and dissemination of relevant information among the public generally and by the provision of support to patients, carers and health professionals.
Myeloma UK informs and supports people affected by myeloma, and helps improve treatment and standards of care through research and education.
|My Name Is Not Cancer
My Name Is NOT Cancer (MNINC) encourages you to be your own person, not a victim of cancer, giving you self-belief and courage, probably at the times you feel most vulnerable.• YOU STAND OUT… your illness doesn’t!
• Survivorship Starts NOW!
• Communication is Key!www.mynameisnotcancer.com
The aims of the Myrovlytis Trust are: to advance and promote research into medical and molecular genetics in order to better understand, diagnose, prevent, cure and relieve conditions caused by genetic disorders and/or diseases including but not limited to Birt-Hogg-Dubé syndrome and the free dissemination of the results of such research to the public; and to advance education of the public in medical and molecular genetics.
|NET Patient Foundation
The NET Patient Foundation provides information and support to people affected by neuroendocrine tumours.
The Neuroblastoma Society’s sole purpose is the relief of children suffering from neuroblastma and to achieve this it raises funds for medical research into improving both diagnosis and treatment of the disease. The Society also offers an opportunity for parents to give each other mutual help, support and comfort.
|Oxfordshire Oesophageal and Stomach Organisation
There is a rising incidence of oesophageal and stomach cancers in the UK yet they are not widely recognised. We are primarily here to support newly diagnosed patients and their carers, to get them through their own ordeals and to find a better way of life. Our work is endorsed by the Oxford clinical team and it is recognised as part of the patients’ on-going management. The organisation is on various committees representing ‘the people’s voice’ in cancer research and patient improvement.
|Oesophageal Patients Association
Our objectives are to help new patients and their families to cope with any difficulties arising as a result of treatments for oesophageal/gastric conditions (predominantly cancers), giving support and encouraging them to achieve a good quality of life. www.opa.org.uk
|Orchid Cancer Appeal
Orchid exists to save men’s lives from testicular, prostate and penile cancers through pioneering research and promoting awareness.
Ovacome is a UK-wide support network providing information and support for everyone affected by ovarian cancer.
|Ovarian Cancer Action
Ovarian Cancer Action works to improve survival in ovarian cancer through funding research, raising awareness and giving a voice to the women, friends and family affected by the cancer.
|Pancreatic Cancer UK
Pancreatic Cancer UK is a national voluntary organisation committed to ensuring increased pancreatic cancer research and improvements in diagnosis, treatment, support and information for pancreatic cancer patients and their families.
|Pancreatic Cancer Action
Pancreatic Cancer Action is working towards saving lives. Pancreatic cancer 5 year survival rates haven’t changed in over 40 years.
Our Mission: To change pancreatic cancer survival numbers,
Our Focus: To improve early detection statistics,
Our Approach: To increase awareness of pancreatic cancer to the public, the medical community and Government
|Pelvic Radiation Disease Association
We want pelvic radiation disease, a late affect of radiotherapy treatment affecting 8,500 new patients each year, to be recognized as a distinct illness that, by the application of simple medical procedures, can be cured and so bring relief to thousands of patients who currently suffer debilitating symptoms and feel isolated and alone. Our website is at
– One in a Million.
Thus named as there are only one in a million people worldwide diagnosed with this disease that originates in the appendix.If left untreated the appendix commonly ruptures filling the peritoneal cavity with mucin and can prove life threatening.Statistically this cancer always returns but with improved medical treatments comes improved survival rates.The charity provides essential support and information about this very rare cancer.
|Rare Disease UK
Rare Cancer UK is the national multi-stakeholder alliance for people with rare diseases and all who support them. Their primary aim is to ensure the development and implementation of a strategy for rare diseases in the UK.
|Rarer Cancers Foundation
Rarer Cancers Foundation (RCF) is a UK charity that offers general advice and information about rare and less common cancers, facilitates supportive networking between patients and carers, and works to improve services for people with rarer cancers.
Sarcoma UK is the main charity in the UK dealing with all types of sarcoma. It funds research into sarcoma through an annual peer reviewed scientific research grants programme, and provides information and support for anyone affected by sarcoma through publications, web information, and local and online groups. www.sarcoma.org.uk
|Tanya’s Courage Trust
Tanya was an extremely courageous young lady of 17, who bravely fought Adult Acute Myeloid Leukaemia for the last 20 months of her short life. Before being diagnosed and during remission Tanya lived life to the full, inspiring others with her courage and determination. During her last precious months, Tanya expressed the wish to help others of her age group. Therefore, in accordance with this wish and in her memory, her family set up a registered charity in 2005: “The Tanya’s Courage Trust”. The Trust’s objective is to aid young people fighting Cancer throughout Cornwall and the Isles of Scilly by the provision of grants which can be used towards relieving their physical or financial needs. We endeavour to support teenagers and young people fighting Cancer and their families but hope that as the charity grows we can widen the personal criteria of beneficiaries. We have helped many beneficiaries: improving the spirit, life and well being of all those attached to the Trust. Our ultimate aim has always been to be involved in developing a Teenage and Young Adult Cancer unit in Cornwall, this is now happening in Cornwall and The Tanya’s Courage Trust has equipped 2 rooms in the new Headland Unit with all the latest entertainment equipment and much more. We are now in the process of fundraising to equip a room in the in patient unit in the Royal Cornwall Hospital.
|Target Ovarian Cancer
Target Ovarian Cancer is dedicated to achieving a long and good life for every woman with ovarian cancer. Their aiim is to beat ovarian cancer by: promoting best practice in diagnosis, treatment and care, raising money to secure funds to support high quality, strategically important research; responding to what women with ovarian cancer want and need and working with them to bring about change; and complementing the efforsts of others working in the field through collaboration.
|Teenage Cancer Trust
The charity focues on the needs of teenagers and young adults with cancer, leukaemia, Hodgkin’s and related diseases. It provides specialist teenage units in NHS hospitals and a range of other direct services and education.
|The Brain Tumour Charity
The Brain Tumour Charity is the leading brain tumour charity in the UK. We fund scientific and clinical research into brain tumour and offer information and support to those affected, whilst raising awareness and influencing policy. Our aim is to improve the understanding, diagnosis and treatment of brain tumours.
|The Eve Appeal
The Eve Appeal was set up to save women’s lives by funding groundbreaking research into the five gynaecological cancers. Its current focus is two-fold:-
|The Ipswich Head & Neck Cancer Support Group
We are a small informal group who meet bi-monthly to help and support Patients, Partners, Carers, Family and Friends of all those affected by Head & Neck Cancer. We also have trained volunteers in the Head & Neck Clinics at the hospital and a dvd about what to expect once you have been diagnosed. We fundraise for things like the dvd and videoscope for the Head & Neck Clinic; we have our own website; an extensive libary of books; cds and dvds to loan out and we hold regular social events so that patients and families can gain the support they need and in the way they need it. Membership is free and all are welcome.
|Thyroid Cancer Support Group Wales
Our group is a self-help support group specifically for thyroid cancer patients, family and friends. We have a buddy system to support new and existing thyroid cancer patients. Whilst we are based in Cardiff, we welcome requests for support from anyone who contacts us. (We have supported a lady with thyroid cancer who is living in Trinidad & Tobago!). Our purpose is to support and help thyroid cancer patients, their families and friends to help them come to terms with this rare cancer. We raise funds where we can and provide improved facilities in the radioiodine treatment rooms at the cancer centre. We are also members of the Thyroid Cancer Alliance. We are always seeking ways of raising awareness of this disease and our support group.
|Wellbeing of Women
Wellbeing of Women is the charity dedicated to improving the health of women and babies to make a difference to everybody’s lives today and tomorrow. We provide information to raise awareness of health issues to keep women and babies well today. We fund medical research and training grants, which have and will continue to develop better treatments and outcomes for tomorrow.
|Wessex Urology Support Group
The aim of the Wessex Urology Support Group is to relieve, assist and help any person suffering from any condition that directly or indirectly affects the bladder and in particular those persons who have undergone, or are about to undergo urological surgery for urinary diversion in the area of Wiltshire, Dorset, Hampshire, Isle of Wight and West Sussex and to improve their quality of life and that of those who care for them.