Newsletter - May 2021

Keep informed about the latest information on Rare Hematological Diseases!

The Assessment of the EU Member States’ rules on health data in the light of General Data Protection Regulation has been published by the European Commission

The study goes on to highlight that co-operation between the EU, Member States and relevant stakeholders is important, with a particular focus on the interests of patients

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The ERICA kick-off meeting has been held!

The different working packages have been presented on the last 27th and 28th May during the The European Rare disease research Coordination and support Action (ERICA) kick-off meeting.

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First webinar session of the Topic on Focus for Patients Organizations on Cutaneous Lymphoma is now available

The video of the first session of the Topic on Focus for Patients Organizations on Cutaneous Lymphoma has been published on ERN-EuroBloodNet EDU YouTube Channel

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The first article on the SCD Patients’ Priorities Blog has been published!

The Sickle Cell Disease Patients' Priorities Blog has been recently launched

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EJP RD's ERN Workshop: "Clinical Research: The Basics & Beyond"

The workshop is open by prior registration and selection to medical specialists affiliated to an ERN Full Member or Affiliated Partner institution and who have a special interest in clinical research with databases

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