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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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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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