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

2. Welcome

3. Antonio L. Andreu, nuevo director del Instituto de Salud Carlos III

4. Campus de Majadahonda Campus de Chamartín Campus de Moncloa

5. Organizational Chart 5 DIRECTOR Office of the Director Advisory Comitee Office of Evaluation and Planification Services, Research and Training Secretariat General Evaluation and Research Promotion Health Networks and Networking Centers forf Biomedical Research International Programs Research on Cell Ttherapy and Regenerative Medicine National Library Of Health Sciences Agency for Health Technolgy Evaluations Technology Transfer Office -results National Bank of Cell Lines GOVERNING BOARD FOUNDATIONS N.C. of Epidemiology N.C. for Microbiology N.C. Center for Environmental Health N.C. of Tropical Medicine Institute of Rare Diseases Research National School of Health National School of Laboral Medicine Research Center of Evolution and Human Behavior Research Center of Congenital Anomalies CONSORTIA (10)

6. DIRECTOR Manuel Posada DIRECTOR Manuel Posada RARE DISEASES EPIDEMIOLOGY BRANCH Ignacio Abaitua RARE DISEASES EPIDEMIOLOGY BRANCH Ignacio Abaitua RARE DISEASES BIOBANK Manuel Posada RARE DISEASES BIOBANK Manuel Posada RARE DISEASES REGISTRY Ignacio Abaitua RARE DISEASES REGISTRY Ignacio Abaitua CONGENITAL ANOMALIES RESEARCH UNIT Eva Bermejo CONGENITAL ANOMALIES RESEARCH UNIT Eva Bermejo TOXIC OIL SYNDROME UNIT Ignacio Abaitua TOXIC OIL SYNDROME UNIT Ignacio Abaitua ETHIC COMMITTEE ETHIC COMMITTEE HUMAN GENETIC BRANCH Francisco Javier Alonso HUMAN GENETIC BRANCH Francisco Javier Alonso IIER Organizational Chart OFFICE’S DIRECTORN AUTISTIC SPECTRUM DISORDERS EPIDEMIOLOGY Manuel Posada AUTISTIC SPECTRUM DISORDERS EPIDEMIOLOGY Manuel Posada MOLECULAR GENETIC Beatriz Martínez MOLECULAR GENETIC Beatriz Martínez CHILDREN RARE TUMORS UNIT Francisco Javier Alonso CHILDREN RARE TUMORS UNIT Francisco Javier Alonso CELLULAR BIOTECHNOLOGY Javier García de Castro CELLULAR BIOTECHNOLOGY Javier García de Castro PHARMACOLOGICAL THERAPIES Sonsoles Hortelano PHARMACOLOGICAL THERAPIES Sonsoles Hortelano ASEREMAC CONSTITUTIONAL BONE DISEASES Antonio Morales CONSTITUTIONAL BONE DISEASES Antonio Morales DISSEMINATION UNIT Cecilia Navascues DISSEMINATION UNIT Cecilia Navascues OUTCOMES RESEARCH UNIT Manuel Hens OUTCOMES RESEARCH UNIT Manuel Hens GIR-RRT SALAMANCA UNIVERSITY GIR-RRT SALAMANCA UNIVERSITY CIBERER RARE DISEASES EPIDEMIOLOGY Verónica Alonso RARE DISEASES EPIDEMIOLOGY Verónica Alonso GENETIC DIAGNOSTIC UNIT Francisco Javier Alonso Gema Gómez (R. Calidad) GENETIC DIAGNOSTIC UNIT Francisco Javier Alonso Gema Gómez (R. Calidad) AgreementsAgreements TranNslational Research Units MEDICAL SOCIEATIES ASEBIO AELMHU EDER FOUNDATION ASEBIO AELMHU EDER FOUNDATION NETWORKS ENERCA RIBERMOV NETWORKS ENERCA RIBERMOV CCAA CREER

7. IIER- Human Genetic Branch

8. IIER Venue

9. Some messages Wifi: internet. Not passwrod is needed Respect your time Certificates End of the meeting

10. Aims of this meeting Type of meeting Agenda (four blocks + workshop) –Overview –Patient registries –RD-CONNECT; EPIRARE-GRDR –Popualtion-based registry strategy SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC

11. Thank you for your contribution On behalf of SainRDR and ISCIII