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. In 2019 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
30^th January 2019	ERN-EuroBloodNet activities	2nd Meeting of Italian EuroBloodNet HCPs	Italy
2^nd February 2019	ERN-EuroBloodNet activities	Local annual meeting on haemoglobinopathies	Cyprus	Marina Kleanthous
14^th March 2019	ERN-EuroBloodNet activities	ICKSH meeting	Korea	María del Mar Mañú Pereira
29^th March 2019	Establishment of an European Network of Sickle Cell Disease Patients Organization	Italian National Meeting at Hospital Policlinico Milano	Italy	Mariangela Pellegrini
4^th April 2019	ERN-EuroBloodNet activities	5th SSB meeting	Belgium	SSB
8^th 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
9^th May 2019	Telemedicine on the European platform	Belgian Hematology Society - Red Blood Cell Committee	Belgium	Fahed Ahssini
17^th -18^th 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
13^th June 2019	ERN-EuroBloodNet activities	EHA Congress 2019	The Netherlands	SSB
19^th 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
19^th June 2019	Le réseau européen ERN-EuroBloodNet	4émé RENCONTRE INTER-ASSOCIATIVE Filière MARIH	France	Pierre Fenaux
^{28^th}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
29^th 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
3^rd July 2019	ERN-EuroBloodNet aims and achievements	Meeting Regional Government Authorities at Gaslini Hospital	Italy	Carlo Dufour
10^th September 2019	JARC Final Meeting	Round Table Discussion 2: Implementation of ERNs	Belgium	Mariangela Pellegrini
11^th September 2019	Cross Border Health for Rare Cancer Cases	JARC at European Parliament	Belgium	Mariangela Pellegrini
13^th September 2019	Cancer Treatment Across Borders ERN-EuroBloodNet Perspective	European Cancer Summit	Belgium	Béatrice Gulbis
20^th September 2019	Preceptorship on AA and PNH	Gaslini Hospital meeting (among all different ERNs Gaslini HCP is member of)	Italy	Carlo Dufour
16^th 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
20^th-21th October 2019	ERN-EuroBloodNet project dedicated to Sickle Cell Disease		United Kingdom	Mariangela Pellegrini and Béatrice Gulbis
20^th-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
29^th October 2019	Challenges and Burden to the Healthcare System: Perspective from Europe	Global Globin 2020	France	Patricia Aguilar-Martínez
29^th October 2019	ERN-EurobloodNet: A European Reference Network for Rare Blood Diseases and a Model for Emulation	Global Globin 2020	France	Mariangela Pellegrini
5^th November 2019	ERN-EuroBloodNet: providing specialized care for patients with rare haematological diseases across Europe	Innovation Bootcamp in Rare Disease	Belgium	Béatrice Gulbis
5^th November 2019	New perspectives in the approach of children with haematological diseases	ERN-Eurobloodnet Initiatives for Sickle Cell Disease	Spain	Victoria Gutiérrez Valle
7^th November 2019	ERN-EuroBloodNet: three years of experience		Spain	Patricia Aguilar-Martínez
13^th November 2019	ERN-EuroBloodNet activities	3^rd Board of Network Meeting	Spain	SSB