Newsletter - January 2020

Keep informed about the latest information on Rare Hematological Diseases!

Check the 3rd Board of Network meeting Outcomes report and slides! 4th BoN meeting will be held 22-23 October in Paris - SAVE THE DATE!!

3rd ERN-EuroBloodNet Board of Network meeting was held last 13 and 14 November in Vall d'Hebron University Hospital, Barcelona, with the participation of more than 80 attendants and important new projects proposed for the upcoming period, check them!

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"The majority of continuing education events I have ever attended were much more theoretically orientated. EuroBloodNet perceptorship was totally different." Read the testimonies of the first PNH and AA program!

First preceptorship has been hosted by AP-HP, Hôpital Saint-Louis under the coordination of Prof Regis Peffault de la Tour. 3 participants from Czech Republic, Lithuania and United Kingdom have benefited from this short stays and have shared with us their own experiences.

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The European Rare Blood Disorders Platform (ENROL) has been approved for funding by the European Commission!

ENROL is conceived in the core of ERN-EuroBloodNet as an umbrella for both new and already existing registries on rare hematological disorders, aiming at avoiding fragmentation of data by promoting the standards for patient registries' interoperability released by the EU RD platform.

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Inaugural meeting of the Global Alliance of Sickle Cell Disease Organizations (GASCDO)

The inaugural meeting of the GASCDO took place last 10th of January in Amsterdam, where ERN-EuroBloodNet presented the European Network of SCD Patients Organizations. ERN-EuroBloodNet is very proud of being part of this new start!

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EuroBloodNet Thursdays Webinars Program starts in January 2020! Register now!

Webinar program is mainly addressed on very rare diseases, complex disorders, highly specialized procedures and implementation of guidelines

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"Digital solutions for health and care could truly revolutionise health and care services and have the potential of helping millions of people enjoy better health"

Andrzej Rys, European Commission Directorate-General for Health and Food Safety, talks about Digital solutions remarking the importance of ERNs

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Rare Disease Day 2020: One month to go! Get involved!

Rare Disease Day represents the greatest occassion of raising global awareness amongst the general public and decision-makers about rare diseases

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Find out the European Joint Programme (EJP) on Rare Diseases calls!

EJP fosters annual Joint Translational Calls, fund Networking Support Scheme and Rare Disease Research, find out the open and upcoming calls!

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PARIS, France

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