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</o:shapelayout></xml><![endif]--></head><body lang=EN-GB link=blue vlink=purple><div class=WordSection1><p class=MsoNormal><o:p> </o:p></p><div><div><div><p class=MsoNormal><b><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222'>COURSE ANNOUNCEMENT</span></b><b><span style='font-size:9.5pt;font-family:"Arial",sans-serif;color:#222222;background:white'><o:p></o:p></span></b></p></div><div><p class=MsoNormal><b><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222'>Please circulate this email to those who might be interested.</span></b><b><span style='font-size:9.5pt;font-family:"Arial",sans-serif;color:#222222;background:white'><o:p></o:p></span></b></p></div><div><p class=MsoNormal><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222'><br><br></span><span style='font-size:9.5pt;font-family:"Arial",sans-serif;color:#222222;background:white'><o:p></o:p></span></p></div><div><p class=MsoNormal><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222'>The National Centre for Rare Diseases, Istituto Superiore di Sanità (Rome, Italy), <span style='background:white'>in collaboration with ELIXIR-IIB, </span></span><span style='font-size:9.5pt;font-family:"Arial",sans-serif;color:#222222;background:white'><o:p></o:p></span></p></div><div><p class=MsoNormal><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222;background:white'>ELIXIR-NL, RD-Connect, EURORDIS, Orphanet, EuRRECa, European Reference Networks, EPIRARE and ICORD, </span><span style='font-size:12.0pt;font-family:"Arial",sans-serif;color:#222222;background:white'><o:p></o:p></span></p></div><div><p class=MsoNormal><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222;background:white'>is pleased to announce the "6th International Summer School on Rare Disease and Orphan Drug Registries", including Bring Your Own Data Registries. </span><span style='font-size:12.0pt;font-family:"Arial",sans-serif;color:#222222;background:white'><o:p></o:p></span></p></div><div><p class=MsoNormal><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222'><br><br></span><span style='font-size:9.5pt;font-family:"Arial",sans-serif;color:#222222;background:white'><o:p></o:p></span></p></div><div><p class=MsoNormal><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222'>COURSE DESCRIPTION:<br><br></span><span style='font-size:9.5pt;font-family:"Arial",sans-serif;color:#222222;background:white'><o:p></o:p></span></p></div><div><p class=MsoNormal><span style='font-size:9.5pt;font-family:"Times New Roman",serif;color:#222222;background:white'>Registries are key resources in order to increase timely and accurate diagnosis, improve patients management, tailor treatments, facilitate clinical trials, support healthcare planning and speed up research.</span><span style='font-size:12.0pt;color:#222222;background:white'><o:p></o:p></span></p></div><div><p class=MsoNormal><span style='font-size:9.5pt;font-family:"Times New Roman",serif;color:#222222;background:white'>The course will provide participants with useful tools and methodologies for establish a registry, the quality of the data collected and how a registry is turned into a FAIR resource.</span><span style='font-size:12.0pt;color:#222222;background:white'><o:p></o:p></span></p></div><div><p class=MsoNormal><span style='font-size:9.5pt;font-family:"Times New Roman",serif;color:#222222;background:white'>It intends: </span><span style='font-size:12.0pt;color:#222222;background:white'><o:p></o:p></span></p></div><div><p class=MsoNormal><span style='font-size:9.5pt;font-family:"Times New Roman",serif;color:#222222;background:white'>i) to promote the establishment of Findable, Accessible, Interoperable, Reusable (FAIR) registries in compliance with IRDiRC and EU Recommendations; </span><span style='font-size:12.0pt;color:#222222;background:white'><o:p></o:p></span></p></div><div><p class=MsoNormal><span style='font-size:12.0pt;font-family:"Times New Roman",serif;color:#222222;background:white'>ii) to support cooperation among different registry </span><span style='font-size:9.5pt;font-family:"Times New Roman",serif;color:#222222;background:white'>stakeholders and coordination with registries that are developed within European Reference Networks and National Plans in the EU.</span><span style='font-size:12.0pt;color:#222222;background:white'><o:p></o:p></span></p></div><div><p class=MsoNormal><span style='font-size:12.0pt;font-family:"Arial",sans-serif;color:#222222;background:white'><o:p> </o:p></span></p></div><div><p class=MsoNormal><span style='font-size:9.5pt;font-family:"Times New Roman",serif;color:#222222;background:white'>The course is organized in two training modules with the following objectives:</span><span style='font-size:12.0pt;font-family:"Arial",sans-serif;color:#222222;background:white'><o:p></o:p></span></p></div><ul type=disc><li class=MsoNormal style='color:#222222;mso-margin-top-alt:auto;mso-margin-bottom-alt:auto;mso-list:l0 level1 lfo1'><span style='font-size:12.0pt;font-family:"Times New Roman",serif;background:white'>the first one (“Rare Disease Registries”, September 10-12, 2018) will provide participants with useful tools </span><span style='font-size:9.5pt;font-family:"Times New Roman",serif;background:white'>and methodologies to plan, establish and manage the registry activities.</span><span style='font-size:12.0pt;font-family:"Arial",sans-serif;background:white'><o:p></o:p></span></li><li class=MsoNormal style='color:#222222;mso-margin-top-alt:auto;mso-margin-bottom-alt:auto;mso-list:l0 level1 lfo1'><span style='font-size:12.0pt;font-family:"Times New Roman",serif;background:white'>the second one (“Bring Your Own Data - BYOD”, September 13-14, 2018) will be a hands-on experience </span><span style='font-size:9.5pt;font-family:"Times New Roman",serif;background:white'>(Bring Your Own Data), where the attendees work with FAIR data experts to make their data FAIR and linked to other data that has been made FAIR before.</span><span style='font-size:12.0pt;font-family:"Arial",sans-serif;background:white'><o:p></o:p></span></li></ul><div><p class=MsoNormal><span style='font-size:12.0pt;font-family:"Times New Roman",serif;color:#222222;background:white'>The "6th International Summer School on Rare Disease and Orphan Drug Registries" is open to health professionals, researchers, medical specialists, registry curators, database managers and representatives of patients’ associations involved in or intend to establish a rare disease registry, including ERN registries.</span><span style='font-size:12.0pt;color:#222222;background:white'><o:p></o:p></span></p></div><div><p class=MsoNormal><span style='font-size:12.0pt;font-family:"Arial",sans-serif;color:#222222;background:white'><o:p> </o:p></span></p></div><div><p class=MsoNormal><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222;background:white'>Registration is possible for:</span><span style='font-size:12.0pt;font-family:"Arial",sans-serif;color:#222222;background:white'><o:p></o:p></span></p></div><div><p class=MsoNormal><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222;background:white'>- the first training module (Rare Disease Registries, Sept. 10-12, 2018)</span><span style='font-size:12.0pt;font-family:"Times New Roman",serif;color:#222222;background:white'><o:p></o:p></span></p></div><div><p class=MsoNormal><span style='font-size:12.0pt;font-family:"Times New Roman",serif;color:#222222;background:white'><o:p> </o:p></span></p></div><div><p class=MsoNormal><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222;background:white'>- the second training module (Bring Your Own Data- BYOD, Sept. 13-14, 2018)</span><span style='font-size:12.0pt;color:#222222;background:white'><o:p></o:p></span></p></div><div><p class=MsoNormal style='margin-bottom:12.0pt'><span style='font-size:12.0pt;font-family:"Times New Roman",serif;color:#222222;background:white'><br></span><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222;background:white'> - or both (Rare Disease Registries and BYOD, Sept. 10-14, 2018).</span><span style='font-size:12.0pt;color:#222222;background:white'><o:p></o:p></span></p></div><div><p class=MsoNormal><o:p> </o:p></p></div><div><p class=MsoNormal><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222'>FEE:<br><br></span><span style='font-size:9.5pt;font-family:"Arial",sans-serif;color:#222222'><o:p></o:p></span></p></div><div><p class=MsoNormal><span style='font-size:9.5pt;font-family:"Times New Roman",serif;color:#222222'>Registration is free of charge. </span><span style='font-size:9.5pt;color:#222222'><o:p></o:p></span></p></div><div><p class=MsoNormal><span style='font-size:9.5pt;font-family:"Times New Roman",serif;color:#222222'>Please, note that travel, subsistence and other costs incurred by the participants to attend the event are not covered by the organisers.</span><span style='font-size:9.5pt;color:#222222'><o:p></o:p></span></p></div><div><p class=MsoNormal><o:p> </o:p></p></div><div><p class=MsoNormal><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222'>VENUE:<br><br></span><span style='font-size:9.5pt;font-family:"Arial",sans-serif;color:#222222'><o:p></o:p></span></p></div><div><p class=MsoNormal><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222'>Aula Rossi, Istituto Superiore di Sanità, Via Giano della Bella, 34 - Rome, Italy.</span><span style='font-size:9.5pt;font-family:"Arial",sans-serif;color:#222222'><o:p></o:p></span></p></div><div><p class=MsoNormal><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222'><br><br></span><span style='font-size:9.5pt;font-family:"Arial",sans-serif;color:#222222'><o:p></o:p></span></p></div><div><p class=MsoNormal><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222'>IMPORTANT DATES:<br><br></span><span style='font-size:9.5pt;font-family:"Arial",sans-serif;color:#222222'><o:p></o:p></span></p></div><div><p class=MsoNormal><b><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222'>Deadline for applications: 16 June 2018</span></b><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222'> Course date: 10-14 September 2018</span><span style='font-size:9.5pt;font-family:"Arial",sans-serif;color:#222222'><o:p></o:p></span></p></div><div><p class=MsoNormal><span style='font-size:9.5pt;font-family:"Arial",sans-serif;color:#222222'><o:p> </o:p></span></p></div><div><div><p class=MsoNormal style='background:white'><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222'>Full details at: </span><span style='font-size:9.5pt;font-family:"Arial",sans-serif;color:#222222'><a href="http://old.iss.it/cnmr/?lang=1&id=2795&tipo=3"><span style='font-size:10.0pt;font-family:"Times New Roman",serif'>http://old.iss.it/cnmr/?lang=1&id=2795&tipo=3</span></a><o:p></o:p></span></p></div><div><p class=MsoNormal style='background:white'><span style='font-size:9.5pt;font-family:"Arial",sans-serif;color:#222222'><o:p> </o:p></span></p></div><div><p class=MsoNormal style='background:white'><span style='font-size:9.5pt;font-family:"Arial",sans-serif;color:#222222'><o:p> </o:p></span></p></div><div><p class=MsoNormal style='background:white'><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222'>Should you have any question, do not hesitate to contact the Organisers at <a href="mailto:rareregistries-school@iss.it"><span style='color:#1155CC'>rareregistries-school@iss.it</span></a></span><span style='font-size:9.5pt;font-family:"Arial",sans-serif;color:#222222'><o:p></o:p></span></p></div><div><p class=MsoNormal style='background:white'><span style='font-size:9.5pt;font-family:"Arial",sans-serif;color:#222222'><o:p> </o:p></span></p></div><div><p class=MsoNormal style='background:white'><span style='font-size:9.5pt;font-family:"Arial",sans-serif;color:#222222'><o:p> </o:p></span></p></div><div><p class=MsoNormal style='background:white'><span style='font-size:9.5pt;font-family:"Times New Roman",serif;color:#222222'>We apologise for cross-posting.</span><span style='font-size:9.5pt;color:#222222'><o:p></o:p></span></p></div><div><p class=MsoNormal style='background:white'><span style='font-size:9.5pt;font-family:"Times New Roman",serif;color:#222222'>Please, email us back with the word REMOVE as the subject line, if you don't want to receive messages from ELIXIR-IIB Training anymore.</span><span style='font-size:9.5pt;color:#222222'><o:p></o:p></span></p></div><div><p class=MsoNormal style='background:white'><span style='font-size:9.5pt;color:#222222'><o:p> </o:p></span></p></div><div><p class=MsoNormal style='background:white'><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222'>Kind regards, </span><span style='font-size:9.5pt;color:#222222'><o:p></o:p></span></p></div><div><p class=MsoNormal style='background:white'><span style='font-size:10.0pt;font-family:"Times New Roman",serif;color:#222222'>the Organisers.</span><span style='font-size:9.5pt;color:#222222'><o:p></o:p></span></p></div></div><p class=MsoNormal><span style='font-size:12.0pt;font-family:"Arial",sans-serif;color:#222222'><br clear=all style='text-align:start;word-spacing:0px'></span><o:p></o:p></p><p class=MsoNormal><br clear=all><o:p></o:p></p><div><p class=MsoNormal><o:p> </o:p></p></div><p class=MsoNormal>-- <o:p></o:p></p><div><div><p class=MsoNormal><b>ELIXIR-IIB Training </b><o:p></o:p></p><div><p class=MsoNormal><a href="https://elixir-iib-training.github.io/website/" target="_blank">https://elixir-iib-training.github.io/website/</a><o:p></o:p></p></div><div><p class=MsoNormal><o:p> </o:p></p></div><div><p class=MsoNormal><img border=0 width=96 height=72 style='width:1.0in;height:.75in' id="_x0000_i1025" src="https://docs.google.com/uc?export=download&id=0B0c7_C2GRNsQTEpVMXRDeDBiQnM&revid=0B0c7_C2GRNsQTXBhc2RHMythRmg2ZCtMeWx1NHBrMUZYMzVZPQ"><o:p></o:p></p></div></div></div></div><p class=MsoNormal style='margin-bottom:12.0pt'>_______________________________________________<br>Training-coordinators mailing list<br><a href="mailto:Training-coordinators@elixir-europe.org">Training-coordinators@elixir-europe.org</a><o:p></o:p></p></div><p class=MsoNormal><o:p> </o:p></p></div></body></html>