ERN-EuroBloodNet
 
Newsletter - March 2022
 

Keep informed about the latest information on Rare Hematological Diseases!

 
 
NEWS
 
 
 
The ERN-EuroBloodNet New Members Welcome Meeting has been held on 21st March
 
 

More than 70 participants from the 36 new ERN-EuroBloodNet Members attended the introductory meeting!

 
 
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Kick-off meeting of ERICA WP3 Patient Centred Expert Working Group
 
 

On the 8th and 10th of March it has been held the Kick-off Meeting of the ERICA WP3: during the 2 sessions the team and participants have discussed about PROMs for Rare Diseases and how to build an accessible repository.

 
 
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Do not miss the opportunity to attend to HÄMATOLOGIE HEUTE symposium!
 
 

The 8th edition of the symposium will be held on-site in Ulm over three days from April 28th-30th.

 
 
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Revisiting classification of ß-thalassemia: “Random Forest Clustering Identifies Three Subgroups of ß-Thalassemia with Distinct Clinical Severity”
 

The work shows that patients with ß-thalassemia can be clustered into three groups based on six parameters of phenotype severity.

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An article focused on the Patient (Advocate)’s Perspective on Biosimilars has been recently published!
 

Maria Piggin, the ePAG representative of Paroxysmal Nocturnal Haemoglobinuria (PNH Support) in ERN-EuroBloodNet, is the author of the recently published article on HemaSphere Journal.

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All 24 ERNs united to help Ukrainian people with rare diseases
 

All 24 European Reference Networks (ERNs) launch a dedicated website and social media campaign to collect information to help health professionals to find support for Ukrainian patients with rare diseases: diagnosis, treatment, advice.

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The ECRD2022 poster submission deadline has been extended to 21st April 2022!
 

The 11th edition will be celebrated next summer, 27th June - 1st July 2022.

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"Training for patient representatives and advocates on leadership and communication skills" is the international course proposed by the EJP RD!
 

The in-person training will take place from November 10th - 11th at ISS in Rome, Italy.

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Participate in the MOOC (Massive Open Online Course) "Diagnosing Rare Diseases: from the Clinic to Research and back"
 

Registrations to this course are free and open!

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The International Summer School on Rare Disease Registries and FAIRification of Data registry will take place next September!
 

The 5-day training programme has been organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD task partners

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Registration to the EJP RD's ERN Workshop on "Translational research on bone impairment in rare diseases" is now open!
 

The training workshop is free of charge and consists of interactive presentations and discussions on different areas of interest.

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The EJP RD ERN Research Training Workshops funding opportunity is now open!
 

The costs for the workshop organization will be covered up to a limit of €25,000.

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Explore the Rare Diseases Clinical Trials Toolbox!
 

The Rare Diseases Clinical Trials Toolbox has been developed as a practical aid for developers of clinical trials on medicinal products for human use regardless of therapeutic area.

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EJP RD has launched the FAIRopoly!
 

The game illustrates the FAIRification steps followed by the ERNs registries to make their data more findable, accessible, interoperable and reusable.

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The International Rare Diseases Research Consortium (IRDiRC) has released an introductory video!
 

The video has been released on the occasion of Rare Disease Day 2022.

Read more
 
 
 
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