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Rare Cancer Type-Specific Patient Support Organisations and Sites

PAEDIATRIC Solid Cancers

  • International Confederation of Childhood Cancer Parent Organisations (ICCCPO) The International Confederation of Childhood Cancer Parent Organisations (ICCCPO) is a worldwide network of organisations of parents of children with cancer focusing on the cooperation and sharing of information and experiences between parent groups around the world, so that all can benefit from it and become more effective in improving the treatment and care of children with cancer in their own countries.
  • World Child Cancer (WCC) World Child Cancer works in low to middle income countries to save the lives of children with cancer and reduce their suffering.

Rare BREAST Cancers

  • Europa Donna – the European Breast Cancer Coalition The Coalition works to raise awareness of breast cancer and to mobilise the support of European women in pressing for improved breast cancer education, appropriate screening, optimal treatment and increased funding for research.
  • Foundation for Women’s Cancer (USA) Foundation for Women’s Cancer is dedicated to funding research and training, and ensuring education and public awareness of gynaecologic cancer prevention, early detection and optimal treatment.
  • Susan G. Komen for the Cure Susan G. Komen for the Cure is a grassroots network of breast cancer survivors and activists working together to save lives, empower people, ensure quality care for all and energize science to find the cures.
  • Triple Negative Breast Cancer Foundation (TNBCF) (USA) TNBCF’s mission is to raise awareness of triple negative breast cancer and to support scientists and researchers in their efforts to determine the definitive causes of triple negative breast cancer, so that effective detection, diagnosis, prevention and treatment can be pursued and achieved.

Rare Cancers of HEAD & NECK

  • Childhood Eye Cancer Trust The Childhood Eye Cancer Trust (CHECT) is a UK wide charity for families and individuals affected by retinoblastoma.
  • Eye Cancer Foundation (USA) The Eye Cancer Foundation was established to serve the needs of eye cancer patients worldwide.
  • Eye Cancer Network (USA) Eye Cancer Network is an online-based community developed to help patients around the world find information and research on the various forms of ocular tumours and related eye diseases.
  • Heads2gether UK A UK support group providing information and support for head and neck cancer patients, their carers, relatives and friends.
  • Oral Cancer Foundation (USA) The Oral Cancer Foundation is a national public service entity designed to reduce suffering and save lives through prevention, education, research, advocacy, and patient support activities.
  • Support for People with Oral and Head and Neck cancer (SPOHNC) (USA) Support for People with Oral and Head and Neck cancer (SPOHNC) is a self-help organisation involved in the development of programmes of support.

Rare CNS Cancers

  • American Brain Tumor Association (USA) The American Brain Tumor Association (ABTA) provides funding to researchers and is also a resource for information and support for brain tumour patients, families and caregivers.
  • Brain Tumour UK Brain Tumour UK provides personalised support online, on the phone, by email and through support groups.
  • Chordoma Foundation The mission of the Chordoma Foundation is to rapidly develop effective treatments and ultimately a cure for chordoma, while improving the diagnosis, treatment, and quality of life for people affected by this devastating bone cancer.
  • International Brain Tumour Alliance (IBTA) 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.
  • National Brain Tumor Society (USA) National Brain Tumor Society (NBTS) brings together research and patient services to be a resource for patients, families, caregivers, researchers, and medical professionals.

Rare DIGESTIVE Cancers

Colorectal and Anal Cancers
  • Colon Cancer Alliance (CCA) (USA) The CCA provides patient support, public education, supports research and conducts advocacy work across America.
  • europacolon europacolon is a European organisation dedicated to colorectal cancer and aims to unite patients, carers, healthcare professionals, politicians, the media and the public in the fight against the disease.
  • Fight Colorectal Cancer (formerly C3: Colorectal Cancer Coalition) (USA) Fight Colorectal Cancer offers support for patients, family members, and caregivers, and serves as a resource for colorectal cancer advocates, policymakers, medical professionals, and healthcare providers.
Liver Cancers, Gallbladder Cancers and Cancers of the Intrahepatic/Extrahepatic Bile Tract (IBT/EBT)
Oesophageal Cancers
  • Barrett’s Oesophagus Campaign (BOC) (UK) BOC supports research into Barrett’s Oesophagus and Oesophageal Cancer by maintaining the Barrett’s Oesophagus Registry (UKBOR) and funding research. It also provides support for Barrett’s Oesophagus sufferers and their families by offering advice via email and facilitating an online support forum.
  • Esophageal Cancer Awareness Association (USA) ECAA is dedicated to helping patients, caregivers, survivors, family members; in short, to anyone affected by the disease.
Pancreatic Cancers
  • Association for Multiple Endocrine Neoplasia Disorders (AMEND) (UK) AMEND is an international patient group supporting and informing anyone affected by or interested in multiple endocrine neoplasia disorders and their associated sporadic endocrine growths.
  • Pancreatic Cancer Action Network (USA) Pancreatic Cancer Action Network is a U.S. organization working to advance research, support patients and create hope for those affected by pancreatic cancer.
  • Pancreatic Cancer Action (UK) Pancreatic Cancer Action works to increase awareness of pancreatic cancer within the general population, the medical community and the UK Government.
  • Pancreatic Cancer UK Pancreatic Cancer UK is a national charity striving for a good and long life for everyone diagnosed with pancreatic cancer.
  • Pancreatica Initiative – Cancer Patients Alliance (USA) The purpose of this site is to serve as a worldwide gathering point on the Internet for the latest news and information in regard to clinical trials and other responsible medical care in the treatment of pancreatic cancer.
Stomach and Small Intestine Cancer
  • No Stomach For Cancer, Inc. (USA) No Stomach For Cancer, Inc. is committed to advancing stomach cancer awareness and education, providing a network of support for families affected by stomach cancer, and funding research for screening, early diagnosis, treatment and prevention of Hereditary Diffuse Gastric Cancer (HDGC) and other diffuse gastric cancers and their related health risks.


Adrenal Cancer
Thyroid and Parathyroid Cancer


  • European Cervical Cancer Association (ECCA) ECCA is a network of organisations and individuals from across Europe that have joined forces to prepare and distribute evidence-based information on the causes and prevention of cervical cancer.
  • Foundation for Women’s Cancer (USA) Foundation for Women’s Cancer is dedicated to funding research and training, and ensuring education and public awareness of gynaecologic cancer prevention, early detection and optimal treatment.
  • Ovacome – The Ovarian Cancer Support Network (UK) Ovacome is a UK-wide support network providing information and support for everyone affected by ovarian cancer.
  • Ovarian Cancer Action (UK) Ovarian Cancer Action funds research, raises awareness of the symptoms and acts as an advocate for people affected by ovarian cancer.
  • Ovarian Cancer National Alliance (USA) The Ovarian Cancer National Alliance advocates for increases in research funding, educates health care professionals and raises public awareness of the signs and symptoms of ovarian cancer.
  • Ovarian Cancer Research Fund (OCRF) (USA) OCRF is dedicated exclusively to funding ovarian cancer research. Its mission is to fund research to find a method of early detection and ultimately a cure for ovarian cancer.


  • Chronic Myeloid Leukaemia Support Group UK CMLSupport.org.uk is an online patient support group.
  • CML Advocates Network CML Advocates Network is a worldwide network of non-profit organisations supporting patients with Chronic Myeloid Leukemia (CML) and their relatives.
  • European LeukemiaNet The European LeukemiaNet is an EU-funded organisation of physicians, scientists and patients with interest in leukaemia. It aims to improve the treatment and knowledge about leukaemia in Europe and spread excellence. The website delivers information for physicians, patients (e.g. patient organisations in Europe), ongoing clinical trials and further information about the disease.
  • The Leukemia & Lymphoma Society (LLS) (USA) The LLS is dedicated to funding blood cancer research and providing education and patient services.
  • Cutaneous Lymphoma Foundation (CLF) (USA) The CLF supports patients with cutaneous lymphoma by promoting awareness and education, advancing patient care, and facilitating research.
  • International Myeloma Foundation (IMF) (USA) The IMF provides information about multiple myeloma including research and treatment advances, as well as information about research, education, support and advocacy programmes.
  • Lymphoma Association (UK) The Lymphoma Association provides medical information and support to lymphatic cancer patients, their families, friends and carers.
  • Lymphoma Coalition The Lymphoma Coalition a global network of lymphoma patient organisations dedicated to raising awareness and improving the understanding of lymphomas, ensuring best practice management and encouraging the creation of new lymphoma patient groups.
  • Myeloma Patients Europe (MPE) Myeloma Patients Europe (MPE) is a recently launched umbrella organisation of multiple myeloma patient groups and associations from across Europe. MPE was formed following the recent merger of the European Myeloma Platform and Myeloma Euronet.
Myelodysplastic and Myeloproliferative Disorders/Neoplasms
  • CMPD Education Foundation (USA) CMPD Education Foundation is run by volunteer MPD patients and its mission goals include information, education and support, patient and MD conferences, newsletters and other publications, doctor-patient sharing, doctor/doctor/researcher networking, and facilitating patient participation/accrual in clinical studies and surveys.
  • MDS Foundation The MDS Foundation is a multi-disciplinary, international organisation devoted to the prevention, treatment, and study of the myelodysplastic syndromes.
  • MPD-NET Online Support Group for Myeloproliferative Disorders MPDinfo.org, a resource of ACOR (Association of Cancer On line Resources) and the CMPD Education Foundation, is an un-moderated discussion list for patients, family, friends, researchers, and physicians, to discuss clinical and non-clinical issues and advances pertaining to agnogenic myeloid metaplasis (primary myelofibrosis), chronic myelogenous leukaemia, essential thrombocythaemia, myelodysplastic syndrome, myelofibrosis and polycythaemia vera.
  • MPN Research Foundation The MPN Research Foundation works to advance research and empower patients with polycythemia vera, essential thrombocythemia and myelofibrosis.

Rare LUNG Cancers

  • European Lung Foundation (ELF) The European Lung Foundation (ELF) was founded by the European Respiratory Society (ERS) with the aim of bringing together patients, the public and respiratory professionals to positively influence respiratory medicine.
  • Global Lung Cancer Coalition The Global Lung Cancer Coalition promotes global understanding of the burden of lung cancer and the right of patients to effective early detection, better treatment and supportive care.
  • WALCE Association (Women Against Lung Cancer in Europe) WALCE Association (Women Against Lung Cancer in Europe) is part of the Scientific Committee of the National Lung Cancer Partnership, an American Association of American women oncologists. This Association helps patients who suffer from lung cancer, mainly in the United States. WALCE aims to be the first association to function on a European scale in the fight against lung cancer.



Rare SKIN Cancers

  • DermIS.net DermIS.net is a dermatology information service available on the internet. Skincancer.dermis.net provides information on skin cancer and how to prevent it.
  • Euromelanoma Euromelanoma is a pan-European campaign for skin cancer prevention that aims to give information to everybody on skin cancer prevention, early diagnosis and treatment.
  • European Skin Cancer Foundation (ESCF) The ESCF aims to assist in developing and providing standardized prevention strategies and treatment guidelines on a European level, contributing thus to better primary and secondary prevention of these malignancies as well as to dissemination of best treatment practices through training and exchange of knowledge.
  • Melanoma Research Foundation (MRF) (USA) The MRF supports medical research, educates patients and physicians about the prevention, diagnosis and treatment of melanoma, and acts as an advocate for the melanoma community to raise the awareness of this disease and the need for a cure.

Rare THORACIC Cancers

  • Asbestos.com Mesothelioma Center provides vital services and free resources for patients and families affected by mesothelioma and other asbestos-related cancers.
  • Mesothelioma International Mesothelioma International provides information and support for those throughout Europe who have been affected by mesothelioma.
  • Foundation for Thymic Cancer Research (FTCR) The FTCR works to collect and share information regarding the treatment, prognosis, and causes of thymic-related cancers and carcinomas, identify various treatment options and to promote research into others, help promote better understanding of the various forms of thymic-related cancers and shed light on support systems, foster support systems for patients and their families, develop a database of experts in this field, and develop products and services to ease the suffering of patients involved in radiation therapy to the head and neck area due to thymic-related cancers and carcinomas.
  • The Yahoo! Thymic Group The Yahoo! Thymic Group supports patients with thymic-related cancers and thymomas.



  • Bonetumor.org (USA) A comprehensive online source for bone tumour information.
  • Chordoma Foundation The mission of the Chordoma Foundation is to rapidly develop effective treatments and ultimately a cure for chordoma, while improving the diagnosis, treatment, and quality of life for people affected by this devastating bone cancer.
  • GIST Support International (USA) GIST Support International provides education and support for people affected by gastrointestinal stromal tumour.
  • GIST Support Wiki (USA) This Wiki is a collection of useful, practical strategies of GIST patients and caregivers in living with GIST cancer, as well as comments about participation in clinical trials with different drugs in development for gastrointestinal stromal tumour treatment.
  • Global GIST Network (GGN) The Global GIST Network is a directory of resources available to GIST patients and their families in their own countries and languages.
  • Life Raft Group (LRG) (USA) The Life Raft Group (LRG) provides support to patients with GIST, through information, education and research.
  • Sarcoma Patients EuroNet Association (SPAEN), the European Network of Sarcoma, GIST and Desmoid Patient Advocacy Groups SPAEN works to extend information services, patient support and advocacy to patient organisations for the benefit of sarcoma patients across the whole of Europe.

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