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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. 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.

RD-Connect announces educational webinar series for ERN Stakeholders

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.

Joint Action on Rare Cancers (JARC) and ERNs

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

ERN video clip now available in all EU languages

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!


ERN-EuroBloodNet interactive session at EHA Annual Congress

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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March 15-17, 2019

Budapest, Hungary

 The main objective of this conference is to translate recent, novel data from basic research on the origin and developmental control of mega/erythroid progenitors in haematopoiesis to clinical practice. The meeting is structured with the specific aim to be translational “from bench to bedside”, and to involve participants in lively interactive discussions. It offers a unique opportunity to discuss basic science in a clinical context. This approach will notably involve the presentation and discussion of challenging clinical cases. The two and half day programme includes 9 sessions that will alternate basic science and clinical practice, with a focus on specific diseases such as CDAs, thalassaemia, SCD, haemolytic anaemias and MDS

European School of Haematology (ESH) 



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