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The RE(ACT) Congress & IRDiRC Conference

The RE(ACT) Congress & IRDiRC Conference

2022-12-27
The event aims to bring together scientific leaders and experts and young scientists from various breakthrough scientific fields to present cutting-edge research, exchange ideas, and discuss rare diseases research policies.
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Discover SYNTHEMA!

Discover SYNTHEMA!

2022-12-18
The project aims to create a hub to develop and validate Artificial Intelligence techniques for anonymization and synthetic data generation in rare hematological diseases.
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Update on Hemochromatosis: “Hemochromatosis classification: update and recommendations by the BIOIRON Society”

Update on Hemochromatosis: “Hemochromatosis classification: update and recommendations by the BIOIRON Society”

2022-06-01
The manuscript of the working group of the International Society for the Study of Iron in Biology and Medicine (BIOIRON Society), coordinated by Domenico Girelli, proposes a new definition and classification of Hemochromatosis (HC).They are intended to be of practical help even for nonexpert clinicians, avoiding delays in diagnosis and treatment, whenever a detailed molecular characterization of HC is not readily available.
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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!

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

2022-02-08
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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ASCAT 2022 will be held next January!

ASCAT 2022 will be held next January!

2021-12-29
The 17th edition is co-organized by the European Heamatology Association (EHA), the British Society of Haematology (BSH) and Annual Academy of Sickle Cell and Thalassaemia Conference (ASCAT).
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The Project Genomics and Personalized Medicine for all though Artificial Intelligence in Haematological Diseases (GENOMED4ALL) under grant preparation phase, counts with the participation of multiple ERN-EuroBloodNet members and experts

The Project Genomics and Personalized Medicine for all though Artificial Intelligence in Haematological Diseases (GENOMED4ALL) under grant preparation phase, counts with the participation of multiple ERN-EuroBloodNet members and experts

2020-11-09
​​​​​​​GENOMED4ALL will make use of the existing infrastructures and initiatives, including powerful High-Performance Computing facilities, hospital registries, data processing tools, and pre-existing repositories towards facilitating personalised medicine in common, rare and ultrarare haematological diseases to demonstrate the versatility and utility of the solutions. For doing this, GENOMED4ALL counts with the participation from ERN-EuroBloodNet
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European Rare dIsease research Coordination and support Action (ERICA) Project, has been evaluated positively, with the involvement of the 24 ERNs for building on the strength of the individual ERNs and create a platform that integrates research and innovation capacity

European Rare dIsease research Coordination and support Action (ERICA) Project, has been evaluated positively, with the involvement of the 24 ERNs for building on the strength of the individual ERNs and create a platform that integrates research and innovation capacity

2020-11-03
ERICA will promote inter-ERN research activities and establish firm collaborative ties with existing European and international infrastructures and consortia involved in rare disease research and innovation. ERN-EuroBloodNet will coordinate WP3-Patient Centred Research in close collaboration with Orphanet.
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COVID-19 infection and Red Blood Cell Disorders

COVID-19 infection and Red Blood Cell Disorders

2020-03-20
The correct treatment and management of these patients may be challenging given the rapid spread of the pandemia and lack of literature so far. At this crucial stage, efforts are being devoted by different initiatives for the generation of indications
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Feasibility study on the opportunity of setting up a European Expert Network for Rare communicable diseases and other rare pathologies in the context of Mobility and Globalization (EURaDMoG)

Feasibility study on the opportunity of setting up a European Expert Network for Rare communicable diseases and other rare pathologies in the context of Mobility and Globalization (EURaDMoG)

2020-03-10
The study, funded by the EU, was produced under the EU Third Health Programme (2014-2020) and is exploring the options to set up a European expert network on rare diseases in the context of mobility and globalisation, with the purpose of improving healthcare provision. The study takes into account different operational, funding and sustainability criteria
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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!

"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!

2020-01-30
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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First issue of the ERN Newsletter has been launched!

First issue of the ERN Newsletter has been launched!

2019-07-08
The European Commission has produced the ERN newsletter aiming to inform the ERN community and interested external stakeholders on the last developments of the ERNs ecosystem while promoting cross-ERNs or cross-Member States ideas and experiences
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Sickle Cell Disease World Day 2019!

Sickle Cell Disease World Day 2019!

2019-06-26
"It is very important to have the voice from politics, authorities, stakeholders, but also from the patients’ themselves so they can meet together and share the actions they want to perform regarding the disease" B. Gulbis, EuroBloodNet co-coordinator
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Cross-border healthcare: are EU citizens aware?

Cross-border healthcare: are EU citizens aware?

2019-01-25
"As legislation that clearly impacts EU citizens, it should be better known", Andrzej Rys, Director responsible for health systems, medical products and innovation, Directorate-General for Health and Food Safety, European Commission
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ERN-EuroBloodNet Disease Search Tool release!

ERN-EuroBloodNet Disease Search Tool release!

2018-10-10
​The engine searches experts based on the information gathered through the Experts’ profile, offering the possibility of searching either by specific disease through the ORPHA classification, or by subnetwork, while including different additional filters
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Joint Action on Rare Cancers (JARC) and ERNs

Joint Action on Rare Cancers (JARC) and ERNs

2018-08-21
JARC works closely with the European Reference Networks (ERNs) to integrate and maximise the efforts of the European Commission, Member States and all other stakeholders with the aim of improving quality of care, and research on rare cancers
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