Keep informed about the latest information on Rare Hematological Diseases!

• Maria del Mar Mañú Pereira, ERN-EuroBloodNet Scientific Coordinator, was elected Co-Chair of the ERN Coordinators, preparing to step into the Chair role next year 2026.
• Managed the organization of the first High-Level Meeting on Rare Diseases where we signed the Declaration on the European Innovation and Care Ecosystem for Rare and Complex Diseases;
• Coordinated over 150 educational courses across the network;
• Developed and presented a Charter on optimal transition from pediatric to adult care in Sickle Cell Disease at the European Parliament;
• Published two Best Practice Guidelines under ERN-EuroBloodNet scope;
• Successfully launched CPMS 2.0;
• Sponsored SATISFY, a multicentre Phase 2 trial evaluating mitapivat in rare hereditary anemias;
• Enabled single-patient level data collection through ENROL's interoperability with RADeep;
• Implemented the HCP Performance System for the annual monitoring report;
• The European Commission released the first public monitoring report on ERN activity.
• Launched the PROMs collection on Sickle Cell Disease (SCD), as part of the ERDERA project.
• And we keep working on research through different collaborative projects...

We have achieved a lot, and we are ready to keep moving forward and advancing in the improvement of healthcare for people living with rare and complex hematological diseases (RHD).

Warm regards,
The ERN-EuroBloodNet Coordination Team.