ERN-EuroBloodNet
 
Newsletter - February 2022 - Today, 28th of February is Rare Disease day!
 

Keep informed about the latest information on Rare Hematological Diseases!

 
 
NEWS
 
 
 
ERN-EuroBloodNet supports Rare Disease day 2022
 
 

Today, 28th February, the ERN-EuroBloodNet wants to contribute to the International Rare Disease Day by giving voice to RD patients, spreading patients' needs and expectations!

 
 
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We are glad to announce that ERN-EuroBloodNet welcomes 36 new full Members!
 
 

We now cover 24 out of 27 EU countries, with 96 full members and 7 affiliated partners.

 
 
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SCD Patients’ Educational Session at ASCAT 2022 January
 
 

The third edition of SCD Patients Therapeutic Educational Session at International Congress has just finished.

 
 
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"Recommendations for Diagnosis and Treatment of Methemoglobinemia" has been published with the acknowledgement of EHA and ERN-EuroBloodNet!
 

The manuscript is the first published joint project between ERN-EuroBloodNet and the European Hematology Association (EHA) Guidelines Committee.

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The manuscript with the results of the ERN-EuroBloodNet European Mapping of Diagnostic Procedures: Primary Central Nervous System Lymphomas has been published!
 

ERN-EuroBloodNet in collaboration with the multidisciplinary team of Institut Curie dealing with PVRL patients, Denis Malaise, Ophthalmologist, Alexandre Matet, Ophthalmologist, Nathalie Cassoux, Ophthalmologist and Carole Soussain, Hematologist, has performed a study of the state of the art of management of PVRL across Europe.

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Registry to the EHA2022 Congress is now open!
 

The first hybrid edition of the EHA Congress will be held in Vienna from 9th to 17th June 2022.

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EJ PRD has announced the official launch of their Instagram account
 

On Rare Disease Day 2022, Prof. Bloom will take over their Instagram and Twitter accounts and post stories relating to EJP RD as well as the important advocacy work that she's engaged in.

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Participate in the "Training on strategies to foster solutions of undiagnosed rare disease cases" course!
 

The online event will take place over three days from on April 11th - 13th.

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The EJP RD has stablished a partnership with the Critical Path Institute
 

Both organizations will support the creation of an interoperable global data ecosystem for rare diseases to expedite the effective development of new therapies.

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Keep updated on ERN-EuroBloodNet actions through its communication channels!
 

Subscribe to the newsletter and follow us on Twitter, LinkedIn and Facebook!

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