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ERN-EuroBloodNet Results Presented in Events

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 PellegriniMaría 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
25th February 2021 "The transition from the childhood to adulthood" Rare Disease Padova - Local  Online Raffaella Colombatti
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

Euro Blood Net