Cooperating organisations

Rare Cancers Europe is a partnership between many organisations.

Rare Cancers Europe is a joint initiative based on a partnership between the European Society for Medical Oncology (ESMO), the European Organisation for Rare Diseases (EURORDIS), the European Cancer Patient Coalition (ECPC), the European Organisation for Research and Treatment of Cancer (EORTC), Conticanet, EuroBoNeT, the World Sarcoma Network (WSN), the Association of European Cancer Leagues (ECL), the Chronic Myeloid Leukaemia Support Group, the International Brain Tumour Alliance (IBTA), Orphanet, the Chronic Myeloid Leukaemia Advocates Network, the Sarcoma Patients EuroNet Association (SPAEN), GIST Support UK & PAWS-GIST, Cancer 52, the Rarer Cancers Foundation (RCF), the International Kidney Cancer Coalition (IKCC), the Chordoma Foundation, the Fondazione IRCCS Istituto Nazionale dei Tumori, the European Institute of Oncology (IEO), the European Society for Paediatric Oncology (SIOP Europe), the European Society of Surgical Oncology (ESSO), the Grupo Español de Tumores Huérfanos e Infrecuentes (GETHI), the European School of Oncology (ESO), the European Oncology Nursing Society (EONS), ecancer, the European Society of Pathology (ESP), the European, Middle Eastern and African Society for Biopreservation and Biobanking (ESBB), Novartis Oncology (initiating sponsor and industry partner), Lilly (industry partner), Pfizer Oncology (industry partner), and Sanofi (industry partner). The campaign is moreover supported by additional corporate supporters.

The cooperating organisations are all represented in the Campaign Organisation Committee where their representatives work together as equal partners.

The collaboration began in 2008 in relation to the organisation of the conference "Rare Tumours in Europe: Challenges and Solutions". Since then, the organisations have continued to work together and more organisations have joined.

		The European Society for Medical Oncology (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.
		The European Organisation for Rare Diseases (EURORDIS) is an alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe.
		The European Cancer Patient Coalition (ECPC) represents the views of cancer patients in the European healthcare debate and provides a forum for European cancer patients to exchange information and share best practice experiences.
		The aims of the European Organisation for Research and Treatment of Cancer (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.
		Conticanet is an international network of excellence generating a critical mass of key stakeholders in order to overcome difficulties in terms of lack of data, data fragmentation, mobility of researchers, heterogeneity of methodologies and legislation and to harmonise research projects, by developing joint research activities, establishing standard operating procedures and distributing databases and tissue banks.
		EuroBoNeT is committed to increasing and disseminating knowledge of primary bone tumours at the molecular level through the exchange of staff and material (virtual BioBank), Standard Operating Protocols and the use of technology platforms which will help to develop new tools for patient care and cure and technology.
		The World Sarcoma Network (WSN) is a global network of national sarcoma trials groups and research organisations with the mission to stimulate rapid clinical drug development for sarcomas and enable performance of clinical studies that a cooperative group could not complete on its own.
		The Association of European Cancer Leagues (ECL) is a pan-European umbrella organisation of national and regional cancer leagues.
		The Chronic Myeloid Leukaemia Support Group (CMLSupport.org.uk) is an online patient support group.
		The International Brain Tumour Alliance (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.
		Orphanet is a multi-lingual database dedicated to information on rare diseases.
		The CML Advocates Network is a worldwide network of non-profit organisations supporting patients with Chronic Myeloid Leukemia (CML) and their relatives.
		The Sarcoma Patients EuroNet Association (SPAEN) works to extend information services, patient support and advocacy to patient organisations for the benefit of sarcoma patients across the whole of Europe.
		GIST Support UK & PAWS-GIST is a charitable trust committed to the promotion and protection of the physical and mental health of patients with Gastro-Intestinal Stromal Tumours (GIST) in the United Kingdom.
		Cancer 52 is an alliance of organisations in the United Kingdom working to address the inequalities that exist in policy, services and research into the less common cancers and to improve outcomes for patients with these highly challenging diseases.
		The 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.
		The International Kidney Cancer Coalition (IKCC) is an independent and democratic network of patient support and advocacy organizations established with the mission of improving the quality of life of patients and their families living with kidney cancer. IKCC provides information, support and assistance to national kidney cancer organizations.
		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.
		The objectives of the Fondazione IRCCS Istituto Nazionale dei Tumori include research into cancer, to better understand the biological mechanisms and to improve the systems of diagnosis and treatment; diagnosis and treatment of cancer, with the methods that are recognized internationally as the most valid; and cancer information for citizens and training of medical and nursing staff involved in the treatment of cancer.
		The aim of the European Institute of Oncology (IEO) 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.
		The European Society for Paediatric Oncology (SIOP Europe) 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.
		The European Society of Surgical Oncology (ESSO) aims to ensure that the highest possible standard of surgical treatment is available to all cancer patients throughout Europe. To this end, ESSO facilitates the dissemination of knowledge and expertise within the surgical oncology community through a range of activities including education, research and leadership in multidisciplinary care.
		The Grupo Español de Tumores Huérfanos e Infrecuentes (GETHI) (Spanish Group for Research on Orphan and Uncommon Tumors) is a Cooperative Group of medical professionals that was established by the Spanish Society for Medical Oncology (SEOM) to better address the issues surrounding rare and uncommon cancers.
		The European School of Oncology (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.
		The European Oncology Nursing Society (EONS) engages in projects to help nurses develop their skills, network with each other and raise the profile of cancer nursing across Europe.
		ecancer is an 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.
		The aims of the European Society of Pathology (ESP) are to advance pathology in Europe and to facilitate communication between European pathologists.
		The European, Middle Eastern and African Society for Biopreservation and Biobanking (ESBB) is a regional chapter of ISBER, the International Society for Biological and Environmental Repositories. The mission of ESBB is to advance the field of biobanking in support of research relating to healthcare, education and the environment.
		Eli Lilly and Company is a global pharmaceutical company committed to developing innovative treatments to make lives better.
		Novartis Oncology is a global pharmaceutical company with the mission to discover and develop innovative medicines to fight cancer.
		Pfizer Oncology is a global pharmaceutical company committed to improving health and well-being at every stage of life.
		Sanofi is a global pharmaceutical company committed to discovering, developing and distributing therapeutic solutions focused on patients’ needs.

Would your organisation like to become involved in this campaign? Please contact us.

200. Call to Action