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 2021, ERN-EuroBloodNet actions and results have been presented acknowledging the ERN in the following events:
| Date of the Event |
Slot in the Agenda |
Event |
Emplacement of the Event |
Representatives |
| 23rd February 2021 |
IV Italian Meeting of Healthcare Providers participating in ERN-EuroBloodNet |
IV Italian Meeting of Healthcare Providers participating in ERN-EuroBloodNet |
Online |
Achille Iolascon, Raffaella Colombatti, Luca Malcovati, Paola Bianchi, Gian Luca Forni, Ugo Ramenghi, Carlo Dufour, Loris Brunetta, Antonio Piga, Matteo Della Porta, Maria Domenica Capellini, Domenico Girelli and Filomena Longo |
| 25th February 2021 |
“Introduction (ERN-EuroBloodNet)” |
Belgian Healthcare Providers Meeting |
Online |
Béatrice Gulbis |
| 27th February 2021 |
Tavola Rotonda - Il Mondo del Sociale e le Istituzione per le Malattie Rare
|
Rare Disease - National Italian European Reference Network
|
Online |
Achille Iolascon and Loris Brunetta |
| 28th February 2021 |
ERN-EuroBloodNet per le malattie rare hematologica |
Rare Disease Verona - National Italian ERN |
Online |
Domenico Girelli |
| 21st May 2021 |
ERN-EuroBloodNet activities |
1st ERN-EuroBloodNet Progress Meeting |
Online |
SSB |
| 24th September 2021 |
An Overview on ERN-EuroBloodNet Initiatives for SCD |
ESCF Summit 2021 |
Online |
Mariangela Pellegrini |
| 30th September 2021 |
Introduction of EU Patient Organizations & EU Patients Groups Representatives (ePAGS) |
GenoMed4all&ERN-EuroBloodNet Patient Engagement e-workshop |
Online |
Mariangela Pellegrini, Sophie Wintrich, Raffaella Colombatti, Ananda Plate, Matteo della porta |
| 14th October 2021 |
An European Sickle Cell Registry: A Tool to Help Optimize Patient Care |
16th International Sickle Cell Disease Congress |
Online |
Béatrice Gulbis |
| 25th November 2021 |
ERN-EuroBloodNet RBC-COVID19 Platform |
IX Course of Eritropathology |
Hybrid (Spain) |
Pablo Velasco and María del Mar Mañú Pereira |
| 28th October 2021 |
ERN-EuroBloodNet activities |
2nd ERN-EuroBloodNet Progress Meeting |
Online |
SSB |
| 13th December 2021 |
ERN-EuroBloodNet European Registry of Patients Affected by Red Blood Cell Disorders and COVID-19
|
63rd ASH Meeting |
Online |
Pablo Velasco |
| 13th December 2021 |
Limited Access to Transcranial Doppler Screening and Stroke Prevention for Children with Sickle Cell Disease in Europe: Results of a Multinational Eurobloodnet Survey
|
63rd ASH Meeting |
Online |
Raffaella Colombatti |
| 20th December 2021 |
|
Meeting Facilitating the creation of a bottom-up European Network of SCD Patients Organizations |
Online |
Mariangela Pellegrini, María del Mar Mañú Pereira, Loris Brunetta, Ariane Weinman and Raffaella Colombatti |
