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E-learning course in growth disorders and endocrine complications in youth and adults with thalassemia

February 28, 2019

This online e-learning module prepared that will support interactively the Thalasemia guide for Patients, and Thalasemia Guide for Hematologs and Nurses in the framework of the European EQUALITY project. The focus of the ICT-based training programme be hematologs and interested medical doctors. The module  include online tests.

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Rare Disease Day 2019 is approaching! Show your rare. Show you care.

28 February 2019 will be the eleventh international Rare Disease Day coordinated by EURORDIS

February 28, 2019

  Rare Disease Day is approaching and thousands of events are organised worldwide to celebrate this special day. The theme for Rare Disease Day 2019 is 'Bridging health and social care'. This theme places attention on the importance of bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day. Rare Disease Day 2019 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease.  

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RD-Connect invites ERN members to join the RD-Connect Community

In July 2018 the new RD-Connect Community was launched as an international association of individuals and organizations who would like to participate in shaping the rare disease field, promote data sharing and reuse and advance research.

In July 2018 the new RD-Connect Community was launched. This is an international association of individuals and organizations who would like to participate in shaping the rare disease field, promote data sharing and reuse and advance research. Membership is free of charge and open to organisations, research groups and individuals from diverse backgrounds, engaged in rare disease research anywhere in the world. Several ERNs have signed up as members, but you are welcome to register as individual healthcare professionals HCPs and research groups.

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RD-Connect announces educational webinar series for ERN Stakeholders

RD-Connect is organising a series of webinars aiming to train ERN members on RD-Connect tools designed to help clinicians and researchers study and diagnose rare diseases.

August 21, 2018

RD-Connect is organising a series of webinars aiming to train ERN members on RD-Connect tools designed to help clinicians and researchers study and diagnose rare diseases.

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Joint Action on Rare Cancers (JARC) and ERNs

JARC works closely with the European Reference Networks (ERNs) to integrate and maximise the efforts of the European Commission, Member States and all other stakeholders with the aim of improving quality of care, and research on rare cancers

August 20, 2018

 JARC works closely with the European Reference Networks (ERNs) to integrate and maximise the efforts of the European Commission, Member States and all other stakeholders with the aim of improving quality of care, and research on rare cancers

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ERN video clip now available in all EU languages

The European Reference Networks video is now available in all EU languages (except Gaelic) and Norwegian!

August 19, 2018

A brief video explaining the main objectives of the ERNs and the concept of Share, Care Cure has been translated to all EU languages (except Gaelic) and Norwegian! Check it out to find out more on ERNs!  

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ERN-EuroBloodNet interactive session at EHA Annual Congress

ERN-EuroBloodNet members representatives and patients' advocates attending the congress met together during an interactive session on Friday 15th June

June 26, 2018

Taking advantage of the biggest congress on hematology in Europe, ERN-EuroBloodNet members representatives and patients' advocates attending the congress met together during an informal interactive session held on Friday 15th.

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Health policies in EU budget 2021-2027

The European Commission adopted last May a legislative proposal for a new European Social Fund Plus (ESF+) Programme

June 4, 2018

Last May 2018 the European Commission adopted a legislative proposal for a new European Social Fund Plus (ESF+) Programme for the period 2021-2027 aiming to become the financial instrument for the implementation of Health Policies while facilitating synergies with other EU instruments financing health-related projects.

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ERN-EuroBloodNet 1st annual report is already available

All the activites and results achieved during first year of ERN-EuroBloodNet implementation are gathered in its first annual report.

April 30, 2018

The first year of the implementation of a network is cornerstone for the consolidation of the pillars of the complex structure in which relies the whole project. ERN-EuroBloodNet first period of implementation has recently ended with the provision of the valuable results for setting the next steps while providing the solid structure on which will relay the future actions of the network.

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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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