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MOST NOTEWORTHY ACTIVITIES PERFORMED IN 2014:
• Organisation of the sixth conference entitled “Investigar es Avanzar” for the dissemination of CIBERER research activity in the framework of the RDs Day . The act was organised in February in Valencia
• Daily update of the web of the CIBERER: in 2014, the web was visited by 115,445 users . • In 2014, CIBERER had 864 hits in the press . This indicator clearly shows that it has become an
unquestionable social reference in the field of research on Rare Diseases .
• Social Newsletter: 6 social newsletters where sent in 2014 .
• Dissemination of the centre’s events, research and activities to the outside world by carrying out press campaigns and continuing handling the press as a communication office . Six press campaigns were carried out in 2014 .
• Representation of the CIBERER at the patient association conference .
• Furthermore, CIBERER participated in the activity TapaConCiencia organised within the framework of the Semana de la Ciencia, in which 8 research projects were presented corresponding to the thematic areas of the CIBER, that served as an inspiration to the cook Jorge Cuellar to design 8 elaborate “tapas” . Dr . Víctor Martínez González-U753 presented before 250 people the CIBERER Exome Server, a project to determine new genes for RDs . The event was covered by more than 20 mainstream and specialised media outlets .
• CIBERER Twitter account statistics:
CIBERER in the press MOST OUTSTANDING IMPACTS ON PRESS IN 2014:
January 2014
December 2014
Updates
1590
2437
Followers
1447
2626
Klout (level of influence, values between 1 and 100)
48
55
Date
Headline/Subject addressed
CIBERER Member mentioned
No. Impacts
03/11/2014
Lowe’s Syndrome, a pathology ultra rare of that only 20 cases are known in Spain
Mercedes Serrano -U703
74
31/12/2014
Start the first database that gathers ge- netic mutations of the Spanish
CIBERER
31
07/02/2014
Identification of the pathogenic mecha- nism of the Lafora disease
Santiago Rodríguez de Córdoba-U738
29
27/10/2014
Overgrowth syndrome caused by the RNF125 gene
Pablo Lampunzina-U753
27
15/10/2014
Ciudad Real receive the new UCLM-bq software manufacturing centre
CIBERER
26
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