Newsletter - June 2020

Keep informed about the latest information on Rare Hematological Diseases!

The European Rare Blood Disorders Platform (ENROL) has officially started! Participate in the online Kick off Meeting next 2nd July!

ENROL has been conceived in the core of ERN-EuroBloodNet as an umbrella for both new and already existing registries on rare hematological disorders. Register to the online Kick off meeting next 2nd July!

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Check the ERN-EuroBloodNet patients' testimony videos for World Sickle Cell Disease Awareness day!

The 19th of June is the World Sickle Cell Disease Awareness' Day (WSCD2020). ERN-EuroBloodNet is glad to participate to this event by creating two patients' testimony videos. Check on them on ERN-EuroBloodNet Youtube channel!

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EMA waives fees for scientific advice for academia developing orphan drugs for rare diseases!

With this initiative EMA searches to encourage the development of treatments for rare diseases

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Find the Haemoglobinopathy Variant Curation Expert Panel recognised by ClinGen!

The Haemoglobinopathy Curation Expert Panel (VCEP), is a joint international effort between the ITHANET portal and the Global Globin Network of the Human Variome Project counting with the participation of ERN-EuroBloodNet members. Discover them!

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HARMONY Alliance has launched a Delphi survey to develop a core outcome set for Non-Hodgkin Lymphoma

The aim of the initiative is to establish a core outcome set (COS) to assist researchers in selecting outcomes for future trials and promote harmonization of NHL studies

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The ERN-EuroBloodNet coordination team has been expanded with the new incorporation of an ERN manager in Barcelona!

Maria Rodríguez has joined the ERN-EuroBloodNet coordination team, based at Vall d'Hebron University Hospital. Welcome on board!

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Hôpital St Louis / Université Paris 7
1 avenue Claude Vellefaux
PARIS, France

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