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ORPHANET
Collecting and updating information
At the end of 2016, the total number of Spanish activities reflected in the Orphanet database was as shown below:
Total Spanish activities in 2016
Expert centres
303
Patients associations
216
Diagnostic tests
8.520
Clinical trials
981
Research projects
480
Registries / Biobanks
73
Translations
A total number of 260 abstracts of diseases and 644 names of new RD were translated into Spanish along with the modification of 2777 names of RD.
In 2016 the translation of the “Disability datasheets” started, describing the functional consequences of RD and their handling, and 4 of these datasheets were translated.
A guide intended for emergency service personnel was also translated.
Furthering the active participation of the Scientific Committee (CC)
In 2016 the members of the CC were involved in different tasks such as the review of summaries of diseases and of clinical guides produced by the Orphanet, the validation of external guides to be included in the database and the directories of expert centres, as well as in replies to patients’ enquiries.
Furthering the communication and dissemination plan
• Contributions to the Orphanews Europe newsletter.
• Maintenance of the Orphanet España web site:
The Orphanet-España web site, which published roughly 64 news items in 2016. In cooperation with patients associations, publicised events on RD and gave access to documents in Spanish on these diseases compiled in the Orphanet in “The Orphanet-Spain Encyclopaedia” section.
In cooperation with the CIBERER communication department, the news items published further its visibility through its Twitter service. The most prominent ones are published on the CIBERER web site and in its institutional newsletter.
• Meeting with the Scientific Committee of Orphanet-España, at the Hospital 12 de Octubre in Madrid.
• Seminar: Information portal of reference in RD and orphan drugs, as part of the “Rare Diseases” course in the Medicine Degree at the Universitat de València.
• Informative desk on the Orphanet at the “I Congreso de Investigación Traslacional en ER de la Comunidad Valenciana” held at the Universitat de València.
• Presentation: Orphanet as a platform for raising awareness on the clinical work done by the CIBERER and its Linked Clinical Groups, 9th Annual Meeting of the CIBERER in Castelldefels, Barcelona.
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