The CIBERER works hard to spread knowledge of research in rare diseases, and uses a large number of channels for this purpose, such as the web page, bulletins meant for different target public (scientific and social) presence on social networks, appearances in the media, organising symposia sessions or bringing out an annual scientific report.
We constantly update our web page with the publication of news items on the work done by CIBERER research groups, an agenda of events, calls for aid and all the relevant information on research into rare diseases. We also give detailed explanations on the research lines of our groups and the Centre’s Research Programmes, as well as the diseases on which we do research and different information for those affected.
We are accessible to different kinds of people interested in research into rare diseases through our two bulletins. The Scientific Bulletin, which we send roughly every month, presents the results of the CIBERER’s research to the scientific community, while the Social Bulletin, a two-monthly publication, is written in a more accessible register so that this can be of interest for those affected and society in general.
We spread news not only of our work but also about everything to do with research in Spain through our active Twitter account, with more than 3200 followers (June 2015). This social network has become a highly useful medium for offering and obtaining information on researchers and patients, to interact with them and broadcast their messages.
Since 2009 the "Research means progress" dissemination session has been held so that researchers and those affected can jointly disclose their cooperation on the days prior to the World Rare Disease Day. This event, which tends to be a success with the public and as regards coverage on the media, thus becomes an outstanding platform for making known the progress made in research to the community of people affected by Rare Diseases and to society as a whole.
We disclose the results of our research through the media by regularly sending press releases and through the constant work of the press office replying to the enquiries of news professionals. Any journalists wishing to get in touch with the CIBERER can do so through one of the following email addresses:
We arrange dissemination sessions for those affected, monographic events on diseases or groups of diseases studied by our research groups. We also take part in therapeutic conferences, sessions, workshops and encounters in Spain and abroad. We are similarly involved in scientific dissemination events in cooperation with other Thematic Areas of the CIBER.
We publish an annual Scientific Report in Spanish and in English in which we give information on the work done by our research groups and the activity of our transversal programmes. This report is published in our web page in PDF and Flash format.