You are here: Home > News & Agenda > News

News

ERN-EuroBloodNet 1st Board of the Network meeting!

The 1st BoN meeting was successfully held last November 10th in Paris

November 20, 2017

ERN-EuroBloodNet 1st Board of the Network meeting was successfully held last November 10th in Paris with more than 70 attendants. This meeting has been crucial for explaining ERN-EuroBloodNet members what has been done since the official approval of ERNs last March and how they will be involved in the coming tasks.

Read more about "ERN-EuroBloodNet 1st Board of the Network meeting!"

ERN-EuroBloodNet Dissemination material is already available!

Check the new leaflet and flyer!

November 13, 2017

 ERN-EuroBloodNet Dissemination material have been produced with the aim of promoting the participation of European health professionals, patients, health authorities and other stakeholders in the common objective of improving healthcare and quality of life of patients affected by Rare Hematological Diseases. In this context, ERN-EuroBloodNet flyer and leaflet will be distributed in face to face meetings, congresses, symposia and other events

Read more about "ERN-EuroBloodNet Dissemination material is already available!"

Diagnosis and treatment of endocrine complications of thalassemic youth and young adults for a better quality of life

The EQUALITY project

October 2, 2017

The aims of EQUALITY Project is to prepare a guide including regular following up patients, to train doctors and to maintain better quality life for thalassemic patients, under the guide and supervision of Prof. Dr.Vincenzo de Sanctis, coordinator of the International Network ComplicationsEndocrine in Thalassemiaan Adolescent Medicine (ICET-A) and consultant in Pediatricsand Adolescent Medicine at Quisisana Hospital of Ferrara (Italy). The second translational Project Meeting took place in September 2017, attended by Prf. J.L. Vives Corrons and  Dr. R. Colombatti.

Read more about "Diagnosis and treatment of endocrine complications of thalassemic youth and young adults for a better quality of life"

5th International Summer School on Rare Diseases and Orphan Drug Registries

The Summer School promoted the establishment of FAIR RDs registries

September 28, 2017

The "5th International Summer School on Rare Diseases and Orphan Drug Registries" was held last 18-22 September in Rome with the aim to promote the establishment of Findable, Accessible, Interoperable, Reusable (FAIR) Rare Disease (RD) registries in compliance with IRDiRC and EU Recommendations.

Read more about "5th International Summer School on Rare Diseases and Orphan Drug Registries"

ERN-EuroBloodNet 2nd Scientific and Strategic Board Meeting

The meeting was held in Brussels last 6th September

September 12th, 2017

The ERN-EuroBloodNet 2nd Scientific and Strategic Board (SSB) Meeting was held in Brussels last 6th September. The 1st Board of the Network meeting will be held next 10th November in Paris.

Read more about "ERN-EuroBloodNet 2nd Scientific and Strategic Board Meeting"

New video on European Reference Networks: a ray of hope for patients with rare and complex diseases, their families and doctors

Watch the new video on ERNs and discover the heart of the networks!

June 29, 2017

In 2017 over 900 highly-specialised medical teams from all over Europe joined their forces in the European Reference Networks (ERNs). Watch the new video produced by the European Commission where doctors and patients explain how the ERNs can tackle complex or rare diseases!

Read more about "New video on European Reference Networks: a ray of hope for patients with rare and complex diseases, their families and doctors"

EuroBloodNet was present at the 2nd ERN Coordinators Group Meeting and at the EHA Annual Congress

A brief Scientific and Strategic Board meeting took place at EHA congress for presenting what was agreed during the ERNs CG meeting and next steps discussion

June 27, 2017

The Joint meeting of the ERN Board of Member States (BoMS) and the ERNs coordinators group and the Second European Reference Networks (ERNs) Coordinators Group Meeting were held las 20th and 21st June 2017 in Brussels under the organization of the European Commission. After both meetings, EuroBloodNet was also present at the European Hematology Association Annual congress 2017 in Madrid, where the Scientific and Strategic Board took the opportunity to briefly join for presenting what was agreed during the ERNs coordinators group meeting and next steps discussion. 

Read more about "EuroBloodNet was present at the 2nd ERN Coordinators Group Meeting and at the EHA Annual Congress"

The guideline document "Standard procedure and guide for the coding with Orphacodes" has been produced by RD-Action

Guideline contains 6 recommendations adapted to different and well defined coding situations.

June 16, 2017

Guideline contains 6 recommendations adapted to different and well defined coding situations, i.e. for healthcare planning, for documenting the activity of expert centres, for statistical purposes, for research, for data exchange at the international level. This document is a major step towards the practical implementation of RD codification, necessary for interoperability between countries but also between different sources of data, coming both from care and research. Hopefully Member States, and countries beyond Europe can find here appropriate answers to questions posed by the challenge of RD coding, and find inspiration for real-life implementation.

Read more about "The guideline document "Standard procedure and guide for the coding with Orphacodes" has been produced by RD-Action"

The 1st European Reference Networks (ERNs) Coordinators Group Meeting was held last 26th April

During the fruitful meeting several key transversally issues concerning all the ERNs were discussed

May 10, 2017

The first European Reference Networks (ERNs) Coordinators Group Meeting was held las 26th April 2017 in Brussels under the organization of the European Commission, where ERN EuroBloodNet was represented by Prof. Béatrice Gulbis (ERN co-coordinator) and Victoria Gutiérrez Valle (ERN IT and dissemination manager), both of them previous members of ENERCA project. During the fruitful meeting several key transversal issues concerning all the ERNs were discussed. The 2nd ERNs Coordinators Group will take place next June 2017.

Read more about "The 1st European Reference Networks (ERNs) Coordinators Group Meeting was held last 26th April"

The EC publishes two guides on Patient Blood Management for safe and rational use of blood/blood products avoiding unnecessary transfusions

One is a practical implementation guide for hospitals and the other is addressed to health authorities

April 19, 2017

Patient blood management is a patient-focused, evidence-based and systematic approach to improve patient outcomes through the safe and rational use of blood and blood products and avoiding unnecessary transfusions. European Commission has published two guides on Patient Blood Management, one addressed to health authorities and the other is a practical implementation guide for hospitals.  

Read more about "The EC publishes two guides on Patient Blood Management for safe and rational use of blood/blood products avoiding unnecessary transfusions"

Copyright © 2002 - 2017 Enerca

Co-funded by the Health Programme of the European Union.