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 2024, 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 |
|---|---|---|---|---|
| 16/01/2024 | HUVH-ICS / VHIR Position in ERN-EuroBloodNet & EU Strategy on ERNs and RDs | Internal scientific committee VHIR | Barcelona (Spain) | María del Mar Mañú Pereira |
| 16/05/2024 |
Innovative therapies, unequal access: Bridging the gap for rare disease treatments |
ECRD 2024 | Brussels (Belgium) | Mariangela Pellegrini |
| 06/06/2024 |
European Reference Network on Rare Hematological Diseases: ERN-EuroBloodNet 7 years |
Journée Académique Prof. Béatrice Gulbis | Brussels (Belgium) | Pierre Fenaux |
| 12/06/2024 | Registro español de anemias (REHem-AR). Contribución al Registro Europeo (RADeep) de EuroBloodNet (ERN) Spanish rare anemias registry. Contribution to the European Registry. |
Sickle cell Disease and Thalassemia Simposium (SimFALTA) | Madrid (Spain) | Elena Cela y José M Marco |
| 13/06/2024 | ERN-EuroBloodNet activities | EHA2024 | Madrid (Spain) | ERN-EuroBloodNet Coordinators and representatives involved |
| 19/06/2024 | Results of the first survey assessing the perspectives of people living with SCD on how to improve outcomes in SCD | First International Conference of SCD in lusophone countries | Lisbon (Portugal) | Mariangela Pellegrini |
| 01/07/2024 | Experience from registries | EMA workshop on the challenges in drug development, regulation and clinical practice in hemoglobinopathies | Online | María del Mar Mañú Pereira |
| 05/07/2024 and 06/07/2024 | Diagnosis improvement and 2024 critical point | 1st international AL amyloidosis meeting | Brussels (Belgium) and online | Nathalie Meuleman |
| 17/09/2024 | ERN-EuroBloodNet, ENROL Registry and data driven projects | British Blood Transfusion Society (BBTS) red cell special interest group meeting | Glasgow (United Kingdom) | Corrina McMahon |
| 25/09/2024 | ERNs registries state of play / ENROL objectives and strategy | ENROL Data Access Committee Meeting | Barcelona (Spain) | María del Mar Mañú Pereira |
| 02/10/2025 | ASCAT x Eurobloodnet Patient Session | 19th Annual Sickle Cell & Thalassaemia Conference, ASCAT 2024 | London (United Kingdom) | Mariangela Pellegrini |
| 07/10/2024 | ERN-EuroBloodNet related projects and activities | 66th ASH Annual Meeting | San Diego, California (USA) | María del Mar Mañú Pereira, Domenico Girelli |
| 20/11/2024 and 21/11/2024 | ERN-EuroBloodNet actions on oncological diseases | European Cancer Summit 2024 | Brussels (Belgium) and online | Pierre Fenaux |
| 21/11/2024 | ERN-EuroBloodNet activities | 6th ERN-EuroBloodNet Progress Meeting | Online | ERN-EuroBloodNet Coordinators and representatives involved |