ERN-EuroBloodNet
 
Newsletter - March 2025
 

Keep informed about the latest information on Rare Hematological Diseases!

 
 
NEWS
 
 
 
ERN-EuroBloodNet at EHA2025 Congress, save the date!
 
 

ERN-EuroBloodNet will be present on this EHA2025 through a dedicated meeting that will take place on Friday 13th June - 13:00-16:00. Agenda and registration link will be followed soon!

 
 
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ERN-EuroBloodNet Welcomes New ePAG Representatives: Jana Pelouchova and Marius Tanase
 
 

ERN-EuroBloodNet is pleased to welcome Jana Pelouchova and Marius Tanase as new European Patient Advocacy Group (ePAG) representatives for the Myeloid Malignancies and Bleeding and Coagulation Disorders subnetworks respectively.

 
 
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New Clinical Trial Map enhances access to research information across the EU
 
 

The map is designed to provide patients and healthcare professionals with easy access to comprehensive, real-time information about clinical trials conducted in their area, increasing access to clinical research in the European Union

 
 
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Regulation on the European Health Data Space published!
 

The Regulation is an important milestone in the EU’s efforts to build a secure and efficient digital health ecosystem as part of the European data strategy.

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European Commission Launches Open-Source HealthData@EU Central Platform – A Major Step for the European Health Data Space
 

The European Commission published the open-source release of the HealthData@EU Central Platform, a major step forward in building the European Health Data Space (EHDS) and enabling the secondary use of health data for research, innovation, policymaking, and public health.

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World Orphan Drug Congress Europe 2025 
 

The World Orphan Drug Congress Europe is the largest and most established event globally for orphan drugs and rare diseases

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