The dissemination of activities and outcomes achieved by the ERNs is a cornerstone to ensure a wide impact among the Rare Disease community, including health professionals, patients and other stakeholders.
In 2023, ERN-EuroBloodNet actions and results have been presented acknowledging the ERN and using the logo; the ERN-EuroBloodNet and its activities were the focus of the presentation and were reflected in the programme/agenda; and all the materials are public and available:
| Date of the Event | Slot in the Agenda | Event | Emplacement of the Event | Representatives |
|---|---|---|---|---|
| 27/01/2023 | Les 5 ans d'ERN-EuroBloodNet | 15e journée nationale de la filière MCGRE | Paris (France) | Béatrice Gulbis |
| 10/02/2023 | Experiences with ERN - designed exchange offers for professionals | Short term mobility and exchanges of healthcare professionals for European Reference Networks | Online | Béatrice Gulbis and Mariangela Pellegrini |
| 18/02/2023 | Patients and hereditary red blood cell disorders Belgian and European reference networks | Académie Royale de Médicine de Bélgique | Brussels (Belgium) | Béatrice Gulbis |
| 22/05/2023 | EURORDIS Alumni Masterclass - Introduction to Quality of Life and Patient-Reported Outcomes. | Alumni Open Masterclasses | Online | Mariangela Pellegrini |
| 26/05/2023 | ERN-EuroBloodNet Oncological subnetworks: Lymphoid & Myeloid Subnetworks |
Quality Cancer Care Network Meeting | Online | Mariangela Pellegrini |
| 26/05/2023 | ERN-EuroBloodNet; Quality Cancer Care Network Meeting | Quality Cancer Care Networking Meeting | Mariangela Pellegrini | |
| 29/05/2023 | Proyectos colaborativos España & ERN-EuroBloodNet en anemias raras. Registros, GenoMed4All, SYNTHEMA | Sickle cell Disease and Thalassemia Simposium (SimFALTA) | Madrid (Spain) | Elena Cela |
| 30/05/2023 | ERN-Eurobloodnet Clinical case discussions | International Neurovascular Training Course on Sickle Cell Disease” | Padova (Italy) | Holger Cario and Maddalena Casale |
| 31/05/2023 | ERN Pilots on PROMs implementation: ERN-EuroBloodNet case, PROMs associated to Clinical Trial | Patient-Centred Research in Rare Diseases: 2023 Workshop | Online | Andreas Glenthøj |
| 31/05/2023 | ERN-EuroBloodNet case, PROMs associated to Clinical Trial | ERICA WP3 Patient Centered Expert Working Group (PCEWG) | Online | Andreas Glenthøj |
| 08/06/2023 | ERN-EuroBloodNet activities | The Role of ERN-EuroBloodNet and ENROL Registry on Advancing Translational and Clinical Research in Hematology | Frankfurt (Germany) | ERN-EuroBloodNet Coordinators and representatives involved. |
| 17/06/2023 | ERN- EuroBloodNet y la enfermedad de células falciformes |
1a Jornada de ASAFE | Madrid (Spain) | María del Mar Mañú Pereira |
| 19/06/2023 | ERN's multi-level actions on SCD | 4th Annual World Sickle Cell Day - 24-Hour Sickle Cell-a-Thon | Online | Béatrice Gulbis |
| 07/07/2023 | Drug reproposing in Rare Diseases | ERICA General Assembly | Madrid (Spain) | Eduard van Beers |
| 11/09/2023 | Implication of ERN-EuroBloodNet | EDITSCD (Annual in-person meeting) | Malta | Mariangela Pellegrini |
| 28/09/2023 | ERN-EuroBloodNet 5 years experience Reference | Belgian Red Blood Cell Meeting | Brussels (Belgium) | Béatrice Gulbis |
| 12/10/2023 | Sickle Cell Disease Education Within the ERN-EuroBloodNet |
Topics-in-Focus Hemoglobinopathies Taskforce meeting | Budapest | Mariangela Pellegrini |
| 19/10/2023 | Non-Transfusion Dependent Thalassemia | 9th Panhellenic | Greece | Antonis Kattamis |
| 20/10/2023 | Expanding Global Data Collection & Clinical Research: Addressing Gaps Through Collaborative Initiatives. | Inaugural Congress of the Global Inherited Blood Disorders Community | Béatrice Gulbis | |
| 26/10/2023 | Global strategy for SCD from patients' point of view. (Results from ERN-EuroBloodNet Survey) | ASCAT | London | Mariangela Pellegrini |
| 01/11/2023 | Collaboration in action: a showcase of Together4RD pilot projects from an industry and ERN perspective -ERN-EuroBloodNet | World Orphan Drug Congress/Together4RD | Barcelona (Spain) | María del Mar Mañú Pereira |
| 09/11/2023 | ERN-EuroBloodNet activities | 5th ERN-EuroBloodNet Progress Meeting | Online | ERN-EuroBloodNet Coordinators and representatives involved. |
| 10/12/2023 | EuroBloodNet - update MDS activities | 65th ASH Annual Meeting | San Diego (United States) | Luca Malcovati |
