1. An initiative of the International Rare Diseases Research Consortium-IRDiRC Spanish Rare Diseases Registries Research Network SpainRDR https://spainrdr.isciii.es Institute of Rare Diseases Research (IIER) Instituto de Salud Carlos III (ISCIII) WP5-Dissemination and impact SpainRDR website Cecilia de Navascués IIER / ISCIII

2. SpainRDR website Hosted by the Institute of Health Carlos III Bilingual Spanish-English Two areas: –Public area –Private area (access through user ID and password) Url: –https://spainrdr.isciii.eshttps://spainrdr.isciii.es SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC

3. SpainRDR website Public area-Homepage Heading: –Institutional logo –Private access –Home –Contact –Site search –Languages

4. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC SpainRDR website Public area-Homepage Main menu: –About SpainRDR –Partners –National RD Registry –Autonomous Communities RD Registries –Patient RD Registries –Data&Reports –Biobank

5. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC SpainRDR website Public area-Homepage SpainRDR photo gallery

6. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC SpainRDR website Public area-Homepage SpainRDR Welcome text IRDiRC text, link to website and IRDiRC statement to download

7. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC SpainRDR website Public area-Homepage 3 related projects are highlighted: –RD Connect –Epirare –Global Rare Disease Registry

8. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC SpainRDR website Public area-Homepage Area for partners’ logos with link to websites (at the bottom)

9. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC SpainRDR website Public area-Homepage Along the column on the right side there are 4 windows with information about: –News –Other RD Registries Actions –Events –Links

10. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC SpainRDR website Private area Access with user ID and password Tools: ― Workroom ― Forum

11. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC SpainRDR website Private area Workroom with: –Basic information (context, structure, agreements, background information) –References (ethics & politics regulations, articles, papers) –Information in process, which is generated during the project (agendas, programs, presentations, minutes, drafts and working groups’ material) –Results and products (deliverables, reports, publications) –Information for guests

12. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC SpainRDR website Private area Forum for solving questions and managing daily work ― Coordinated by Patricia García Primo at the IIER

13. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC Other dissemination actions in progress Conferences Science and Technology Expo Press Releases Social Networks Leaflet and brochures

14. Thank you very much! SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC