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  • About Rare Cancers
    • Definition of Rare Cancers
    • "Families" and List of Rare Cancers
    • The Burden and the Challenges of Rare Cancers
    • The Added Value of Research on Rare Cancers
  • About the Campaign - Objectives
  • Call to Action
    • Full text
    • Signatories
  • Political Recommendations
  • EU initiatives
  • How to get involved
  • News
    • 21 November 2012: Joint Statement on EU Clinical Trials Regulation
    • 3 October 2012: Survey Open: Access to Rare Cancer Care in the EU – Have Your Say!
    • 20 July 2012: International survey on Pathology in Rare Cancers launched
    • 12 June 2012: U.S. NCI issues guidance for deliberations on rare cancer trial closures
    • 4 June 2012: Rare cancer research project announces world’s largest release of human cancer genome data
    • 2 April 2012: Cancer Cell Line Encyclopedia may help to improve rare cancer research
    • 27 March 2012: European Alliance for Personalised Medicine calls for early access to personalised medicine
    • 12 March 2012: ESMO Conference on Sarcoma and GIST: Doctors lack awareness of rare forgotten cancers
    • 21 February 2012: European conference explores ways to improve clinical research on rare cancers
    • 15 February 2012: International Childhood Cancer Day: Calls for policy changes
    • 24 November 2011: International Rare Cancers Initiative: EORTC – UK – US Global Collaboration
    • 16 November 2011: Recommendations on Quality Criteria for Centres of Expertise for Rare Diseases adopted by EUCERD
    • 10 November 2011: EU consultation to improve recognition of cross-border prescriptions
    • 24 September 2011: Rare Cancers Europe: New name and new action
    • 24 September 2011: European Multidisciplinary Cancer Congress highlights challenges posed by rare cancers
    • 12 July 2011: EP Workshop on Rare Cancers: The Added Value of Closer Cooperation
    • 20 May 2011: European Platform for Rare Disease Registries
    • 31 March 2011: EurocanPlatform for cross border cancer research launched
    • 22 March 2011: EU Register of Clinical Trials launched Online
    • 15 March 2011: European childhood cancer research in danger
    • 28 February 2011: Rare Disease Day – Focus on Health Inequalities
    • 15 February 2011: MEPs remember Children with Cancer
    • 12 January 2011: EP Meeting: Challenges of Rare Cancers
    • 27 November 2010: Open Letter concerning 2011 UN Summit on Non-Communicable Diseases
    • 9 October 2010: ESMO Rare Cancers Press Briefing
    • 9 October 2010: ESMO 2010 Rare Cancers Press Briefing Videos
    • 7 October 2010: Underestimated Obstacles to Rare Cancer Care
    • 5 October 2010: EP Meeting: Orphan Drugs for Rare Cancers
    • 13 September 2010: European Action Against Rare Cancers Secretariat
    • 9 December 2009: EU Committee of Experts on Rare Diseases
    • 24 June 2009: Launch of European Action Against Rare Cancers
    • 10 December 2008: Rare cancers are common; optimal care is not
  • Rare Cancers Conference 2012
  • Surveys
  • Events
  • Cooperating organisations
    • Campaign Organisation Committee
    • Governance principles
    • Video testimonials from Cooperating organisations
    • Quotes from the Cooperating organisations
  • Corporate supporters
  • Links
    • General Cancer Patient Support Organisations and Sites
    • Rare Cancer Type-Specific Patient Support Organisations and Sites
    • General Professional Organisations, Research Organisations and Sites
    • Cancer Type-Specific Professional Organisations, Research Initiatives and Sites
    • Clinical Practice Guidelines for Professionals and Guides for Patients
  • Campaign materials
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General Professional Organisations, Research Organisations and Sites

- Professional Organisations

- Research Organisations and Initiatives

- Other Useful Sites and Open Access Publications (General)

Professional Organisations

- European Society for Medical Oncology (ESMO) ESMO is the leading European professional organization, committed to advancing the specialty of medical oncology and promoting a multidisciplinary approach to cancer treatment and care, to ensure that people with cancer receive the most effective treatments available and the high-quality care they deserve.

- European CanCer Organisation (ECCO) ECCO brings together major players in cancer research, treatment, and care in order to create awareness of patients’ wishes and needs, encourages progressive thinking in cancer policy, education, and training, and promotes European cancer research and its application through the organisation of multidisciplinary meetings and conferences.

- European Hematology Association (EHA) EHA aims to promote excellence in clinical practice, research and education in European hematology.

- European Group for Blood and Marrow Transplantation (EBMT) EBMT aims to promote all aspects associated with the transplantation of haematopoietic stem cells from all donor sources and donor types including basic and clinical research, education, standardisation, quality control, and accreditation for transplant procedures.

- International Society for Experimental Hematology (ISEH) ISEH is dedicated to the promotion of the scientific knowledge and clinical application of basic haematologic and immunologic disorders through research, publications, and scientific programmes.

- European Society for Therapeutic Radiology and Oncology (ESTRO) ESTRO exists to advance all aspects of radiation oncology through a range of activities for its members and the wider healthcare and patient communities.

- European Musculo-Skeletal Oncology Society" (E.M.S.O.S.) The aims of the "European Musculo-Skeletal Oncology Society" (E.M.S.O.S.) are to advance the science and practice of the diagnosis and treatment of bone and soft tissue tumours, to promote basic and clinical research, and to disseminate knowledge in order to provide a common high standard of musculo-skeletal oncology. The particular purpose of the Association is to promote mutual collaboration between different specialists and institutes involved in the treatment of musculo-skeletal tumours.

- Connective Tissue Oncology Society (CTOS) CTOS is an international group comprised of physicians and scientists with a primary interest in the tumours of connective tissues. The goal of the society is to advance the care of patients with connective tissue tumours and to increase knowledge of all aspects of the biology of these tumours, including basic and clinical research.

- European Association of Neurooncology (EANO) EANO is the pan-European organisation that represents all the medical and scientific disciplines involved in the diagnosis and treatment of tumours of the nervous system. EANO exists to stimulate interaction and collaboration between those with an interest in neurooncology and provides educational activities through events such as the biennial EANO congresses and also via the EANO website.

- European Society of Surgical Oncology (ESSO) ESSO is committed to the education and training of surgical specialists and has a number of activities aimed at implementing the subject matter in its core curriculum.

- European Society of Oncology Pharmacy (ESOP) ESOP works to develop and promote clinical and oncology pharmacy practice through education and training, safe handling and administration of drugs, quality management, research and development, and pharmaceutical care.

- European Society of Breast Cancer Specialists (EUSOMA) EUSOMA’s mission is to define gold standards in the management of breast diseases, favouring a rapid transfer of knowledge from research centres to clinical practice. EUSOMA aims to promote scientific research and increase contacts between scientists and health care professionals, improve and standardise the level of patient care throughout Europe, bring these to the attention of the appropriate Authorities, and foster training and post-graduate programmes in breast disease.

- European Society of Gynaecological Oncology (ESGO) ESGO strives to improve gynaecological cancer care by providing training standards, educational opportunities and breakthroughs in the prevention, treatment and study of gynaecological oncology.

- International Society of Geriatric Oncology (SIOG) SIOG is a multidisciplinary society, including physicians in the fields of oncology and geriatrics, and allied health professionals to foster the development of health professionals in the field of geriatric oncology, in order to optimize treatment of older adults with cancer.

- European Society for Paediatric Oncology (SIOP Europe) SIOPE is a European organisation aimed at promoting optimal standards of care for children and young people with cancer and dedicated to enhancing cancer awareness, diagnosis and treatment of children.

- European Oncology Nursing Society (EONS) EONS engages in projects to help nurses develop their skills, network with each other and raise the profile of cancer nursing across Europe.

- European Society of Pathology (ESP) The aims of the Society are to advance pathology in Europe and to facilitate communication between European pathologists.

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Research Organisations and Initiatives

- European Organisation for Research and Treatment of Cancer (EORTC) The aims of the EORTC are to develop, conduct, coordinate, and stimulate translational and clinical research in Europe to improve the management of cancer and related problems by increasing survival but also patient quality of life.

- EORTC Cancer in Elderly Task Force The aims of the EORTC Cancer in the Elderly Task Force (ETF) are inspired by the global EORTC strategy. The ETF wants to develop, conduct, coordinate, and stimulate research on elderly patients with cancer.

- European Association for Cancer Research (EACR) In pursuing the advancement of cancer research, the Association provides services to members, presents educational, training and scientific meeting opportunities, and facilitates communication and collaboration between cancer researchers.

- International Agency for Research on Cancer (IARC) IARC’s mission is to coordinate and conduct research on the causes of human cancer, the mechanisms of carcinogenesis, and to develop scientific strategies for cancer prevention and control.

- Organisation of European Cancer Institutes (OECI) OECI’s mission is to bring together the cancer research and care institutions of the EU in order to create a critical mass of expertise and competence with the view of building and maintaining a consensus on the best models of oncology, developing concrete affordable and realistic solutions to effectively combat cancer, and fostering the widest deployment of oncology models and solutions to improve the quality of life for the patients in the EU.

- EurocanPlatform EurocanPlatform is an EC funded project that brings together 28 European cancer institutions and organisations sharing infrastructures and collaborating on projects to help advance cancer research and treatment.

- Partnership-driven Resources to IMprove and Enhance Research (PRIMER) The PRIMER project was established to create an online library of resources to facilitate multi-site collaborations for health research.

- The Cell Death Network The Cell Death Network strives to facilitate and improve high-quality cell death research around the globe.

- European School of Oncology (ESO) ESO is committed to improving the skills of all health professionals dealing with cancer patients and to shortening the length of time needed to transfer knowledge from research centres to daily practice, combining advanced technology with humanism in care.

- European School of Hematology (ESH) ESH promotes and facilitates access to state of the art and cutting-edge knowledge in haematology and related disciplines, at the European and International level.

- European Institute of Oncology (IEO) The aim of the European Institute of Oncology is to implement an innovative model for health and advanced research in the international oncology field, from basic laboratory research that tries to grapple with the genetic roots of cancer – through to advanced clinical research such as testing new drugs, with the unifying goal which is to treat patients more effectively.

- Multinational Association of Supportive Care in Cancer (MASCC) MASCC is dedicated to research and education in all aspects of supportive care for patients with cancer, regardless of the stage of their disease.

- Central European Cooperative Oncology Group (CECOG) CECOG was formed to unite centres of clinical oncology from Central and South-eastern Europe as well as Israel into a united body devoted to the conduct of clinical trials and provide postgraduate education in oncology.

- European Network for Cancer in Childhood and Adolescents (ENCCA) By integrating all relevant stakeholders from the European paediatric oncology community, including patients and families through ICCCPO (International Confederation of Childhood Cancer Parent Organisations), ENCCA is dedicated to unite informal Clinical Trial Groups in Paediatric and Adolescent Oncology and their affiliated research platforms to form a sustainable European Virtual Institute.

- Innovative Therapies for Children with Cancer (ITCC) European Consortium ITCC gathers 37 European Paediatric Oncology Departments (map of Centers) with expertise in conducting early phase trials in children and adolescents, and 9 European research laboratories to develop novel therapies for the treatment of paediatric and adolescent cancers in cooperation with regulatory bodies, pharmaceutical enterprises, parents and patients.

- Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer (PanCare) PanCare is a multidisciplinary pan‐European network of professionals, survivors and their families that aims to reduce the frequency, severity and impact of late side‐effects of the treatment of children and adolescents with cancer.

- European Paediatric oncology Off-patent medicines Consortium (EPOC) The EPOC study is being conducted in 21 centres in 4 countries across Europe to improve the knowledge of doxorubicin pharmacokinetics in children in order to give more precise dose recommendations in different age groups, reducing toxicity while maintaining efficacy.

- Collaborative Oncological Gene-environment Study (COGS) COGS is a project funded by the European Commission to define individual risk of breast-, ovarian- and prostate cancer.

- RARECARE RARECARE has estimated the burden of rare cancers in Europe and provided an operational definition of “rare cancer”, a list of cancers meeting that definition, and cancer burden indicators (incidence, survival, prevalence and mortality on rare cancers across Europe.

- GLOBOCAN project The aim of the project is to provide contemporary estimates of the incidence of, and mortality from major type of cancers, at national level, for all countries of the world.

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Other Useful Sites and Open Access Publications (General)

- European Medicines Agency (EMA) The Agency is responsible for the scientific evaluation of medicines developed by pharmaceutical companies for use in the European Union.

- EU Register of Clinical Trials The EU Clinical Trials Register website allows to search for information on clinical trials in European Union (EU) member states and the European Economic Area (EEA) and clinical trials which are conducted outside the EU/EEA if they form part of a paediatric investigation plan (PIP).

- Trans European Network for Clinical Trials Services (TENALEA) TENALEA, an international project to facilitate high quality clinical research, provides an online service for the conduct of high quality healthcare research and tools for the registration and randomisation of participants in research, drawing on decades of collective experience from leading cancer research institutions in Europe.

- European Health Management Association (EHMA) The aim of the Association is to improve health management and health policies through the development and exchange of both ideas and practices among academics, researchers, managers, clinicians, policy makers and consumers throughout Europe.

- EUnetHTA Collaboration Focusing on scientific cooperation in HTA in Europe, thirty four government-appointed organisations from the EU Member States, Accession Countries and EEA work together to help developing reliable, timely, transparent and transferable information to contribute to HTAs in European countries.

- International Association of Cancer Registries (IACR) The IACR is a professional society dedicated to fostering the aims and activities of cancer registries worldwide.

- European Network of Cancer Registries (ENCR) The ENCR promotes collaboration between cancer registries, defines data collection standards, provides training for cancer registry personnel and regularly disseminates information on incidence and mortality from cancer in the European Union and Europe.

- EUROCOURSE: EUROpe against Cancer: Optimisation of the Use of Registries for Scientific Excellence in research The main purpose of EUROCOURSE is to improve the use of cancer registries in European countries through program owners’ and researchers’ networking, information exchange and benchmarking of best practice. This project is initiated by the European Network of Cancer Registries (ENCR) and their stakeholder paymasters.

- European, Middle Eastern and African Society for Biopreservation and Biobanking (ESBB) ESBB is a regional chapter of ISBER, the International Society for Biological and Environmental Repositories, an international society for people interested in the biobanking of human and non-human biological materials. The mission of ESBB is to advance the field of biobanking in support of research relating to healthcare, education and the environment.

- International Society for Biological and Environmental Repositories (ISBER) ISBER is an international society for people interested in the biobanking of human and non-human biological materials. ISBER’s mission is to create opportunities for sharing ideas internationally and harmonizing approaches to evolving challenges in biobanking and repository operation. ISBER fosters collaborations, creates education and training opportunities, and provides an international showcase for state-of the art research findings and cutting edge technologies, products and services.

- Cancer Cell Line Encyclopedia The CCLE project is a collaboration between the Broad Institute, and the Novartis Institutes for Biomedical Research and its Genomics Institute of the Novartis Research Foundation to conduct a detailed genetic and pharmacologic characterization of a large panel of human cancer models, to develop integrated computational analyses that link distinct pharmacologic vulnerabilities to genomic patterns and to translate cell line integrative genomics into cancer patient stratification. The CCLE provides public access analysis and visualization of DNA copy number, mRNA expression and mutation data for about 1000 cell lines.

- Global Rare Diseases Registry – GRDR The U.S. National Institutes of Health (NIH) Global Rare Diseases Registry – GRDR is a pilot programme launched by the NIH Office of Rare Diseases Research (ORDR), in collaboration with Patient Crossroads, Children Hospital of Philadelphia, and WebMD, to establish a Global Rare Diseases Patient Registry and Data Repository (GRDR), gathering anonymised patient clinical information to enable analyses of data across many rare diseases and to facilitate clinical trials and other studies.

- NIH Office of Rare Diseases Research (ORDR) Biospecimens/Biorepositories The U.S. National Institutes of Health (NIH) Office of Rare Diseases Research (ORDR) Biospecimens/Biorepositories Web site: Rare Disease-HUB contains a searchable database of biospecimens collected, stored, and distributed by biorepositories in the United States and around the globe.

- OECI European Human Tumor Frozen Tissue Bank (TuBaFrost) The OECI-TuBaFrost is an exchange platform offering insight into which biobank has certain materials and whom to contact for a request of these materials. It enables to compile large sets of samples of high quality needed for obtaining statistical significant results. Furthermore, OECI-TuBaFrost also supports the exchange of materials within a consortium running a project. The later is a confined to only members of the consortium, whereas the open access is open for all OECI members.

- International Rare Diseases Research Consortium (IRDiRC) IRDiRC was launched in April 2011 to foster international collaboration in rare diseases research. IRDiRC will team up researchers and organisations investing in rare diseases research in order to achieve two main objectives, namely to deliver 200 new therapies for rare diseases and means to diagnose most rare diseases by the year 2020.

- Union for International Cancer Control (UICC) UICC’s mission is to eliminate cancer as a life-threatening disease for future generations and deliver the targets of the World Cancer Declaration through strategic partnerships involving members and other institutions interested in fighting cancer.

- World Health Organization (WHO) WHO is the directing and coordinating authority for health within the United Nations system responsible for providing leadership on global health matters, shaping the health research agenda, setting norms and standards, articulating evidence-based policy options, providing technical support to countries and monitoring and assessing health trends.

- ecancerHub ’ecancerHub’ aims to be a hub of information for those affected by cancer, providing an open-access, integrated approach to providing the whole cancer community with high-quality and trustworthy information. ’ecancerHub’ brings together information from major European cancer organisations in one easy-to-use site. The aim of the site is to create a single place where patients, health care professionals, researchers and policymakers can all come together to interact, discuss, debate and build knowledge.

- ecancer ecancer is the leading oncology channel committed to improving cancer communication and education with the goal of optimising patient care and outcomes. By using the latest technologies ecancer works closely with leading figures in oncology to inform and educate the global cancer community.

- ecancermedicalscience ecancermedicalscience, an open access cancer journal founded by the European Institute of Oncology in Milan, aims to improve communications between sub-specialised cancer scientists and clinicians by working interactively and faster – offering authors a rapid peer review process – and actively encourages the communities of sub-specialised scientists and cancer carers to exchange ideas and research, speeding up the time it takes from discovery, to patient benefit.

- Rare Tumors Open Access Scientific Journal Rare Tumors is a peer-reviewed international medical journal devoted entirely to the study, diagnosis, and treatment of rare cancers. The journal covers the diagnosis, classification, and treatment of rare tumours and haematological malignancies for physicians and medical scientists interested in uncommon neoplasms. The primary intent of the journal will be to publish clinically relevant information that will directly improve the care of patients with rare cancers.

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200. Call to Action

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