Page 53 - MEMOCiberer014-ENG

TRANSLATIONS:
A total of 286 disease summaries and 722 names of new RDs, with the modification of another 2,882 RD names already included in the database have been translated to Spanish and incorporated in the web page .
To contribute to the translation of the Orphanet Patient Encyclopaedia, a series of texts containing abundant information about a number of RDs 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 pending publication .
PROMOTING ACTIVE PARTICIPATION OF THE SCIENTIFIC COMMITTEE (SC)
Scientific Committee (SC) members were involved in different tasks in 2014, such as reviewing disease summaries, clinical guidelines belonging to Orphanet and external guidelines and the lists of expert centres, as well as answering patient queries . Furthermore, SC members collaborated as external reviewers in validating guidelines written by CIBERER .
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:
• Centro de Referencia Estatal de Atención a Personas con Enfermedades Raras y sus Familias de Burgos (Creer)
- Contribution to the CREER newsletter with the publication of a presentation paper of the Orphanet portal and of the activities of Orphanet-Spain (no 43, April 2014) . (http://www . creenfermedadesraras .es/creer_01/documentacion/boletindigitalcreer/ano_2014/news_abril/ profesionales_abril/index .htm)
- Attendance to the Conference “Actualización de Recursos de Atención en Enfermedades Raras” (24 June 2014) .
• Orphanet Spain staff together with CIBERER managers handle queries submitted by people with RDs and forward them to different experts on the Orphanet Scientific Committee depending on the pathology in question .
• 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 100 articles throughout 2014 . In collaboration with patient associations, it disclosed events relating to RDs in Spain, particularly those relating to Rare Disease Day . It also provided access to documents in Spanish on these diseases, such as the various guidelines contained in the “Enciclopedia de Orphanet-España” (Orphanet-Spain Encyclopaedia), or specific documental resources to offer social, educational and health support for people suffering from rare diseases in Spain, compiled in the “Otros recusos” (Other resources) section .
In collaboration with the communication office of the CIBERER, the news published in the Orphanet-Spain web boosts its visibility through its Twitter service . Furthermore, those that stand out the most in relation to the Orphanet portal itself are published on the CIBERER web site and in its institutional newsletter .
www .ciberer .es 53