Page 63 - MemoriaER-Eng

www.ciberer.es

• The Electronic Newsletter used to periodically report CIBERER activity to as-
sociated investigators and also to external directors interested in RD. 7 elec-

tronic newsletters were sent out.

• Services over the web and Intranet for communicating funding opportunities

and events for research on RD. The Management Office is responsible for
updating all the news and events of interest for the research groups every

day, promoting the use of the web and the Intranet as a fundamental tool in

CIBERER.

External The Communication Service has offered support to investigators so that their ac-
tivity can be better understood both by people suffering from RD and by society
Communication
as a whole. With its External Communication Service, CIBERER has transmitted
Service
the scientific activity of its research groups, social and institutional activity of the
Institution and the events it organized, in order to bring it closer to the reality of

patients and family members.

CIBERER has used various means for that purpose. The Communication Department

has acted as a press office, carrying out dissemination campaigns intended for the
press and dealing with information professionals. CIBERER has also organized dis-

semination events and updated its web page every day to turn it into an effective
communication platform on both an external and internal level. It has also perio-

dically sent out the Social Newsletter, an electronic publication for providing all the

information about CIBERER and its research in RD to patients, associations that
represent them and to anyone else interested in this field. Since October 2011,

CIBERER has also had an active Twitter account which it uses to interact with in-

vestigators, patients and the remaining groups of interest in RD.

Most noteworthy activities performed in 2013:

• Daily CIBERER web update, turning it into a dynamic communication tool that

includes ongoing research, events calendar, funding opportunities and other
information of interest about RD. In 2013, the web was visited by 69,556

users (measured by Google Analytics).

• In 2013, CIBERER had 1,002 hits in the press. This indicator clearly shows

that it has become an unquestionable social reference in the field of research
in Rare Diseases. In 2013, CIBERER had 28% more hits than in 2012.

• Organization of the fifth conference entitled “Investigar es Avanzar” for the
dissemination of CIBERER research activity in the framework of the RD Day.
13
The act was organized in February in Madrid, and it was also given significant 20
coverage in the press.
T
OR
P
• Social Newsletter, used to provide information about RD of interest to patient RE
associations and other groups associated with these pathologies and/or with L
A
research into them in a simple and comprehensible manner. In 2013, 6 social NU
newsletters were sent out.
N
A
R /
• Dissemination of the centre’s events, research and activities to the outside E
world by carrying out press campaigns and continuing handling the press as a ER
B
communication office. Eleven press campaigns were carried out in 2013.
CI

• Representation of the CIBERER at the patient association conference.
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• CIBERER Twitter account, with 1,943 followers.