Page 49 - MemoriaER-Eng

www.ciberer.es

Translations

A total of 286 disease summaries and 1,177 names of new RD have been translated
to Spanish and incorporated in the web page.

To contribute to the translation of the Orphanet Patient Encyclopedia, a series of

texts containing abundant information about a number of RD written so that the

general public can understand it, CIBERER has allocated of part of the budget for
this platform to translating and validating 12 of these articles, all of which are pen-

ding publication.

Promoting active participation of the Scientific Committee (SC)

Scientific Committee (SC) members were involved in different tasks in 2013, such
as reviewing disease summaries, clinical guidelines belonging to Orphanet and ex-

ternal guidelines and the directories of expert centres. They were also involved in

answering patient queries.

Promoting the communication and dissemination plan

Greater dissemination of the Orphanet project is essential for giving the portal

greater exposure and therefore maximizing its usefulness. The following actions,

among others, have been boosted for that purpose:
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• Participation as teachers in the following courses:

- Official Master’s in “Current Knowledge on Rare Diseases”, Universidad
Internacional de Sevilla, Seville, March 20.

- Course entitled “Rare Diseases: Research, clinical care and social aware-

ness”, Escuela de Estudios de Salud de Valencia, Valencia, September 9.

• Orphanet- Spain staff together with CIBERER managers handle queries sub-

mitted by people with RD, and forward them to different experts on the
Orphanet Scientific Committee depending on the pathology in question. The

graph shows that more than a third of the queries made by people with rare

diseases reach CIBERER through the Orphanet web.

• Contributions to the Orphanews Europe newsletter.

• Maintenance of the Orphanet Spain web:

The Orphanet-Spain web page, which is developed by the Spanish team of

documentalists and transmits current situation, events and documentation
of Orphanet, which are all relevant on a national level, published about

120 articles throughout 2013. In collaboration with patient associations,

it advertised events relating to RD in Spain, particularly those relating to 13
Rare Disease Day. It also provided access to documents in Spanish on these 20
T
diseases, such as the various guidelines contained in the “Enciclopedia de OR
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Orphanet-Espaa” (Orphanet-Spain Encyclopedia), or specific documental RE
resources to offer social, educational and health support for people suffering L
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from rare diseases in Spain, compiled in the “Other resources” section.
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