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European Reference Networks one year anniversary

ERNs after first year of activity

March 12, 2018

 European Reference Networks (ERNs) have just celebrated the first year anniversary from their beginning of activity with the aim to tackle rare and complex conditions. Using the EU's great pool of knowledge and expertise, by connecting our assets through ERNs can bring concrete benefits to many thousands of patients.

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Major European Grant for New Research Program: Solve-RD

Kick-off Meeting: Tübingen . 29-30 January 2018

February 2, 2018

The Solve-RD research program is a project funded by the EU’s Horizon 2020 that will directly involve the European Reference Networks (ERNs) in order to diagnose currently undiagnosed rare disease patients using the latest in genetic technologies.

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Rare Disease Day 2018 is approaching! Show your rare. Show you care.

28 February 2018 will be the eleventh international Rare Disease Day coordinated by EURORDIS

February 2, 2018

Continuing on from Rare Disease Day 2017, the theme of this year is Research. Rare disease research contributes to the development of diagnostic tools, treatments and cures, as well as improved health and social care for patients and their families. Take part in an interactive face paint social media campaign to raise awareness of rare diseases and show your support for the rare disease community! Show your rare. Show you care.

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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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