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. 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 |
|---|---|---|---|---|
| 30th January 2019 | ERN-EuroBloodNet activities | 2nd Meeting of Italian EuroBloodNet HCPs | Italy | |
| 2nd February 2019 | ERN-EuroBloodNet activities | Local annual meeting on haemoglobinopathies | Cyprus | Marina Kleanthous |
| 14th March 2019 | ERN-EuroBloodNet activities | ICKSH meeting | Korea | María del Mar Mañú Pereira |
| 29th March 2019 | Establishment of an European Network of Sickle Cell Disease Patients Organization | Italian National Meeting at Hospital Policlinico Milano | Italy | Mariangela Pellegrini |
| 4th April 2019 | ERN-EuroBloodNet activities | 5th SSB meeting | Belgium | SSB |
| 8th April 2019 | Improving registries and clinical trials for rare diseases | Assessment of a European Expert Network on communicable diseases and other rare pathologies in the context of Mobility and Globalisation | Spain | María del Mar Mañú Pereira |
| 9th May 2019 | Telemedicine on the European platform | Belgian Hematology Society - Red Blood Cell Committee | Belgium | Fahed Ahssini |
| 17th -18th May 2019 | Establishment of an European Network of Sickle Cell Disease Patients Organization, as ERN Best Practice Model for patients involvement. | Membership Meeting, Eurordis | Romania | Loris Brunetta |
| 13th June 2019 | ERN-EuroBloodNet activities | EHA Congress 2019 | The Netherlands | SSB |
| 19th June 2019 | ERN-EuroBloodNet: le projet d'un réseau européen des associations de patients atteints de drépanocytose | Journée internationale de la drépanocytose | Belgium | Mariangela Pellegrini |
| 19th June 2019 | Le réseau européen ERN-EuroBloodNet | 4émé RENCONTRE INTER-ASSOCIATIVE Filière MARIH | France | Pierre Fenaux |
| 28th June 2019 | Le réseau européen ERN-EuroBloodNet | 8ÈME JOURNÉE NATIONALE DE LA FILIÈRE DE SANTÉ MCGRE, Maladies Constitutionnelles Rares du Globule Rouge et de l' érythropoïèse | France | Pierre Fenaux |
| 29th June 2019 | Establishment of an European Network of Sickle Cell Disease Patients Organization | French National Meeting at Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis | France | Mariangela Pellegrini |
| 3rd July 2019 | ERN-EuroBloodNet aims and achievements | Meeting Regional Government Authorities at Gaslini Hospital | Italy | Carlo Dufour |
| 10th September 2019 | JARC Final Meeting | Round Table Discussion 2: Implementation of ERNs | Belgium | Mariangela Pellegrini |
| 11th September 2019 | Cross Border Health for Rare Cancer Cases | JARC at European Parliament | Belgium | Mariangela Pellegrini |
| 13th September 2019 | Cancer Treatment Across Borders ERN-EuroBloodNet Perspective | European Cancer Summit | Belgium | Béatrice Gulbis |
| 20th September 2019 | Preceptorship on AA and PNH | Gaslini Hospital meeting (among all different ERNs Gaslini HCP is member of) | Italy | Carlo Dufour |
|
16th October 2019 |
Promoting clinical and basic research on rare anaemias in the frame of ERN- EuroBloodNet | Hematology Unit Vall d'Hebron | Spain | Victoria Gutiérrez Valle |
| 20th-21th October 2019 | ERN-EuroBloodNet project dedicated to Sickle Cell Disease | United Kingdom | Mariangela Pellegrini and Béatrice Gulbis | |
| 20th-21th October 2019 | Presentation of the results of the Sickle Cell Disease Research Prioritisation Workshop at ASCAT 2019 | Sickle Cell Disease Research Prioritisation Workshop at ASCAT 2019 | United Kingdom | |
| 29th October 2019 | Challenges and Burden to the Healthcare System: Perspective from Europe | Global Globin 2020 | France | Patricia Aguilar-Martínez |
| 29th October 2019 | ERN-EurobloodNet: A European Reference Network for Rare Blood Diseases and a Model for Emulation | Global Globin 2020 | France | Mariangela Pellegrini |
| 5th November 2019 | ERN-EuroBloodNet: providing specialized care for patients with rare haematological diseases across Europe | Innovation Bootcamp in Rare Disease | Belgium | Béatrice Gulbis |
| 5th November 2019 | New perspectives in the approach of children with haematological diseases | ERN-Eurobloodnet Initiatives for Sickle Cell Disease | Spain | Victoria Gutiérrez Valle |
| 7th November 2019 | ERN-EuroBloodNet: three years of experience | Spain | Patricia Aguilar-Martínez | |
| 13th November 2019 | ERN-EuroBloodNet activities | 3rd Board of Network Meeting | Spain | SSB |
| 10th January 2020 | Establishment of an European Network of Sickle Cell Disease Patients Organizations | GASCDO Inaugural face-to-face meeting | The Netherlands | Mariangela Pellegrini |
| 18th February 2020 | ERN-EuroBloodNet activities | European Network of Sickle Cell Disease Patients Organizations - Spanish and Portuguese National Meeting | Spain | Mariangela Pellegrini, María del Mar Mañú Pereira and Victoria Gutiérrez Valle |
| 20th February 2020 | ERN-EuroBloodNet activities | 3rd ERN-EuroBloodNet Meeting of Italian Healthcare Providers | Italy | Healthcare Providers Italian Members Representatives |
| 22nd February 2020 | ERN-EuroBloodNet | European Reference Networks Meeting for Rare Disease Day | Italy | Antonella Meloni |
| 5th March 2020 | ASCAT Workshop results + The Establishment of The Sickle Cell Disease Patients Organisation | 2020 Belgian Meeting on Red Blood Cell Disorders for Scientists and Patients | Belgium | Mariangela Pellegrini |
| 5th March 2020 | The role of ERNs in enabling cross border (clinical) research on Rare Diseases | Malta Association of Biomedical Scientists (Thalassaemia International Day) | Online | María del Mar Mañú Pereira |
| 1st July 2020 | ENROL Kick off meeting | ENROL Kick off meeting | Online | |
|
4th November 2020 |
Filière MARIH: RENCONTRE INTER-ASSOCIATIVE MARIH5, Meeting annuel Nationale | Maladies Rares: Point de Vue de l'Europe | Online | Mariangela Pellegrini |
| 14th November 2020 | Filière MCGRE: Journée des associations, Meeting annuel Nationale | Le réseau européen EuroBloodNet et les patients | Online | Mariangela Pellegrini |
| 22nd November 2020 | 4th Board of Network meeting | 4th Board of Network meeting | Online | |
| 4th December 2020 | ESCF: Capacity Building, Learning and Networking Webinar | The ERN-EuroBloodNet Platform for Sickle Cell Disease Patients Advocacy and Education | Online | Mariangela Pellegrini |
| 8th December 2020 | Panel discussion: Bridging the Gap Between Innovation and Patients | “Preparing Europe For Novel Cell and Gene Therapies” Launch Event of the European Alliance for Transformative Therapies | Online | Béatrice Gulbis |
| 16th December 2020 | Modelo europeo de unidades referencia (ERN-EuroBloodNet) | Diagnóstico y Manejo de las Enfermedades Raras en Eritropatología, Abordaje Multidisciplinar, Modelo de Atención en un Centro de Referencia | Online | María del Mar Mañú Pereira |
| 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 |
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 | 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 | |
| 26th-28th January 2022 | ASCAT 2022 | Online | Mariangela Pellegrini | |
| 8th-10th February 2022 | Patient-centred Research for Rare diseases - ERICA WP3 Patient Centred Expert Working Group | Online | María del Mar Mañú Pereira and Mariangela Pellegrini | |
| 2th March 2022 | Le reti europee e il loro impatto sulle attività assistenziali e sulla qualità della vita dei pazienti - Responsabili reti ERN |
Malattie Rare e Best Practice: il Policlinico e le sue Reti Europee |
Online | Wilma Barcellini |
| 10th March 2022 | Welcome and Introduction | Belgian Red Blood Cell Day | Online | Béatrice Gulbis |
| 10th March 2022 | Covid-19 in sickle cell disease patients, the European registry experience | Belgian Red Blood Cell Day | Online | María del Mar Mañú Pereira |
| 18th March 2022 | Introducing a national reference center approved ERN-EuroBloodNet | Scientific Event for CTCL 2022 | ||
| 15th May 2022 | PROMS experience report & ERICA WP 3 |
ERKnet Annual Meeting | Online | Mariangela Pellegrini |
| 10th June 2022 | ERN-EuroBloodNet European Registry of Patients Affected by Red Blood Cell Disorders and Covid-19 | Hybrid (Austria) | Pablo Velasco | |
| 12th June 2022 | Radiomics and Artificial Intelligence for Identification and Monitoring of Silent Cerebral Infarcts in Sickle Cell Disease: First Analysis from the Genomed4all European Project | Hybrid (Austria) | Raffaella Colombatti | |
| 21st June 2022 | WP3 "Patient Centered Research in Rare Diseases" | Hybrid | María del Mar Mañú Pereira and Mariangela Pellegrini | |
| 29th Aprile 2022 | La ricerca e gli European Reference Networks, reti di riferimento europee | Garantire Salute e Inclusione Sociale Alla Persona con Malattia Rara | Online | Loris Brunetta |
| 30th May 2022 | V Meeting degli HCP italiani che partecipano ad ERN-EuroBloodNet | Online | Achille Iolascon, Domenica Taruscio, Pierre Fenaux, Béatrice Gulbis, Mariangela Pellegrini, Loris Brunetta, Paola Bianchi, Matteo Della Porta and María del Mar Mañú Pereira | |
| 20th-22nd October 2022 | ERN Sessions | ASCAT 2022 | United Kingdom | Noémi Roy. Raffaella Colombatti and Mariangela Pellegrini |