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Rare Anaemia Disorders European Epidemiological Platform (RADeep)

The umbrella for both new and already existing European patients’ registries in rare anaemias

January 15, 2018

The Rare Anaemia Disorders European Epidemiological Platform (RADeep) is currently being implemented as a joint venture conceived in the core of ERN-EuroBloodNet to become an umbrella for both new and already existing European patients’ registries in rare anaemias (RAs). We are very happy to anounce the launch of RADeep website! 

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Winners of the EURORDIS Black Pearl Awards 2018!

Stars of the rare disease community recognised for their efforts through the EURORDIS Black Pearl Awards.

January 15, 2018

 The EURORDIS Black Pearl Awards are presented to the stars of the rare disease community - patient advocates, organisations, policy makers, scientists, companies and media - for their major achievements and their outstanding commitment to the rare disease cause. There were over 350 nominations, representing 37 different countries worldwide. The recipients of the EURORDIS Black Pearl Awards 2018 have been already announced!

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State of Health in the EU

The European Commission diagnoses the state of Health in the EU

November 27, 2017

28 Country Health Profiles have been published by the Commission that provide a depth analysis of EU Member States' health systems by analysing health of the population, important risk factors and show the effectiveness, accessibility and resilience of health systems in each EU member state. The reports reflect shared objectives across the member states, and reveal potential areas where the Commission can encourage mutual learning and exchange of good practices.

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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.

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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

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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.

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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.

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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.

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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!

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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. 

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