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VERSION:2.0
PRODID:icalendar-ruby
CALSCALE:GREGORIAN
BEGIN:VEVENT
DTSTAMP:20260925T234451Z
UID:601630c9-91a2-42be-b5e0-89f86622cf7f
DTSTART:20180910T060000Z
DTEND:20180914T153000Z
DESCRIPTION:The "6th International Summer School on Rare Disease and Orphan
  Drug Registries" is organized by the National Centre for Rare Diseases 
 – Istituto Superiore di Sanità in collaboration with RD-Connect\, ELIXI
 R-IT\, ELIXIR-NL\, EURORDIS\, Orphanet\, EuRRECa\, European Reference Netw
 orks\, EPIRARE and ICORD.\nRegistries are key resources in order to increa
 se timely and accurate diagnosis\, improve patients management\, tailor tr
 eatments\, facilitate clinical trials\, support healthcare planning and sp
 eed up research.\nThe course will provide participants with useful tools a
 nd methodologies for establish a registry\, the quality of the data collec
 ted and how a registry is turned into a FAIR resource.\nIt intends i) to p
 romote the establishment of Findable\, Accessible\, Interoperable\, Reusab
 le (FAIR) registries in compliance with IRDiRC and EU Recommendations and 
 ii) to support cooperation among different registry stakeholders and coord
 ination with registries that are developed within European Reference Netwo
 rks and National Plans in the EU. 
LOCATION:Istituto Superiore di Sanità\, Via Giano della Bella\, 34
SUMMARY:6th International Summer School on Rare Disease and Orphan Drug Reg
 istries
URL;VALUE=URI:http://old.iss.it/cnmr/?lang=1&id=2795&tipo=3
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