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Scientific-Social Dissemination Programme
CIBERER constantly presents society with the work done by its research groups, its projects, the diseases which are being worked on and the new knowledge generated, through its scientific-social dissemination programme.
CIBERER has worked hard to make its web page (www.ciberer.es) an effective instrument. This is accredited by the Scopus ranking, which considers it one of the most important scientific web pages. More than 160 news items and 120 records on the centre’s work and of interest in the field of RD have been published through this portal. In 2016 its new version in English also came out. CIBERER has furthermore published 11 press releases over the year, with a large number of appearances in the media.
We should also stress the issue of CIBERER’s newsletter, a very effective publication which publicises the research work done in Rare Diseases (RD) by CIBERER and also sends all the information of interest on RD to the researchers contracted by and attached to our Institution. In 2016, knowledge of the different parties involved was improved and cooperation has been enhanced by means of the 10 scientific and 5 social newsletters issued
Along with the Fundación Genzyme, CIBERER sponsored the book entitled “Ética en la investigación de
las enfermedades raras” (Ethics in research into rare diseases) directed by Doctors Carmen Ayuso (U704), Rafael Dal-Ré (Universidad Autónoma de Madrid) and Francesc Palau (U732), which is intended to generate reflection and provide information to come to terms with the ethical concerns currently arising through research into rare diseases.
Lastly, CIBERER organised several scientific encounters for outreach to those affected over the year. Here are some examples of these events:
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In February CIBERER celebrated the World Rare Disease day as a network, by joining the FEDER campaign “Creando REDES de esperanza”.
The 9th Annual Meeting of the CIBERER, at which over 240 members of the thematic area presented the progress made in translational research into RD in Castelldefels in March.
The CIBERER co-organised 2 international symposia with the Fundación Ramón Areces: one Symposium on international platforms of biomedical research and their value in the study of rare diseases and others on rare skin diseases, both in Madrid in November and October.
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