RARECARENet (Information Network on Rare Cancers) is funded by the European Commission's EU Health Programme 2008-2013 and coordinated by the Fondazione IRCCS, Istituto Nazionale dei Tumori, Italy. RARECARENet involves partners all around Europe.
The research project was carried out between May 2011 to May 2015, closed project.
The project aims at building an information network to provide comprehensive information on rare cancers to the community at large (oncologists, general practitioners, researchers, health authorities, patients). The final objectives are to improve the timeliness and accuracy of diagnosis, to facilitate the access to high quality treatment for patients with rare cancers, to identify centres of expertise for rare cancers in Europe and to standardize practices across Member States (MS).
Within this project, ECPC built a network of patients’ organisations and treatment centres and created a virtual library of information materials for rare cancer patients in order to facilitate prevention, diagnosis and treatment. This is important due to the challenges faced by rare cancer patients among which we could mention: late or incorrect diagnosis, lack of access to appropriate therapies and clinical expertise and a dearth of clinical trials.
ECPC has finalised a list of 144 rare cancer patient organisations in Europe with the aim to build a good network to support patients with rare cancers. The list is available on the RARECARENet and provides details such as the name of the organisation, the country, the contact details and links to the respective websites. To facilitate the search, the organisations can be found by ''country'' or by ''cancer site''.
The creation of the list was supported by Orphanet, the portal for rare diseases and orphan drugs.
To add your organisation to the growing rare cancer patient organisations network please fill in this form.
ECPC has collected information materials on most of the rare cancers identified by the RARECAREnet experts. The aim was to create an online library on the RARECARENet website where patients can find information on the diagnosis, treatment and follow-up of any type of rare cancer. The information has been collected from rare cancer patient organisations participating in the project, the Macmillan Cancer Support centre in the UK, STARToncology and the ESMO patient guides.
ECPC developed new information materials for patients with the help of experts when information was not available online:
Rare cancers of the pancreas
Rare cancers of the prostate
Rare cancers of the lung - created by the European Lung Foundation
In 2015, ECPC organised 4 national meetings in Belgium, Bulgaria, Slovenia and Ireland respectively. The objectives of the meetings were to present the RARECARENet high resolution studies and volume analysis results in each selected country and to open a discussion on the quality of care for rare cancers and which is the best model to ensure it.
Please click on the country of your interest for more information:
Belgium - in collaboration with the Belgian Cancer Registry
Bulgaria - in collaboration with the National Oncology Hospital and the Bulgarian National Cancer Registry
For the Bulgarian version click here.
Slovenia - in collaboration with the Cancer Patients Association of Slovenia and Institute of Oncology Ljubljana
For the Slovenian version click here - in collaboration with the National Cancer Control Programme
To access the overall Policy Recommendations based on all the above meetings on ‘’What can be done about rare cancers?” click here.
RARCARENet Treatment Centers
Finally, after a continuous collaboration with health ministries in most EU countries to better understand how the issue of rare cancers is tackled in every country, ECPC has developed a list of treatment centres for rare cancers across Europe. The list, available on the RARECARENet website, provides information by country and by cancer type always making sure that the selection criteria, methodology and source of information are stated.
Criteria for rare cancers selection
List of rare cancers
RARECARENet is funded by the EU Health Programme 2008-2013: the Second Programme of Community Action in the Field of Health 2008-2013, Project N° 20111201.