EuroBloodNet
 
Newsletter - April 2020
 

Keep informed about the latest information on Rare Hematological Diseases!

 
 
NEWS
 
 
 
ERN-EuroBloodNet Real time Collaborative Platform on Red Blood Cell and COVID19 patients is open!
 
 

Join the ERN-EuroBloodNet Collaborative Platform on Red Blood Cell and COVID-19 to share clinical information for supporting daily medical practice and allow interprofessional consultations

 
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Register to the new Webinars program! "EuroBloodNet's Topic on focus: Cutaneous Lymphoma" is starting on May!
 
 

EuroBloodNet Topic on focus will encompass a set of comprehensive series of Webinars tackling specific conditions. The first Focus will be on Cutaneous Lymphoma starting from May!

 
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Guidelines on EU Emergency Assistance in Cross-Border Cooperation in Healthcare related to the COVID-19 crisis
 

Guidelines will help national, regional and local authorities, through a wide range of existing policies and schemes, to enhance cross-border healthcare for patients suffering from COVID-19, but also for other pathologies, with a view to relieve the burden placed on health systems.

Read more
 
 
 
 
COVID-19 and Red Hematological Diseases - Keep updated at the EuroBloodNet dedicated section
 

The correct treatment and management of infection by Coronavirus (COVID-19) in patients affected by Rare Hematological Diseases may be challenging given the rapid spread of the pandemia and limited literature so far

 
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Register until 1st May to the European Conference on Rare Diseases & Orphan Products (ECRD) 2020!
 

Be part of the global rare disease community at ECRD 2020 and shape the future for people living with a rare disease! Register now!

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IthaScore, a gene-ranking metric for haemoglobinopathy-specific phenotypes
 

The ITHANET portal is an expanding resource for clinicians and researchers dealing with haemoglobinopathies by integrating information on database of variations (IthaGenes), epidemiology (IthaMaps) and HPLC data (IthaChrom), and also now gene-ranking metric IthaScore

 
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EURORDIS publishes "No time to lose: Building a data strategy for the European Reference Networks"
 

The objective of this paper is to trigger a strategic discussion on health data and ERNs that will allow the Networks to have a long-term strategy that is aligned with their needs and ambition

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Report of the "Workshop on the use of registries in the monitoring of cancer therapies based on tumours’ genetic and molecular features" hosted in November 2019 by the EMA
 

The European Medicines Agency (EMA) hosted a workshop in November 2019 to discuss aspects that should be considered by all stakeholders to facilitate the use of data collected by cancer registries, as core data elements, quality assurance measures among other considerations.

 
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Have you checked out "EuroBloodNet Thursdays Webinars" Program? Register now!
 

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

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European Hematology Association (EHA) annual congress goes Online on June 11-14
 

Due to COVID-19 pandemia, the the 25th Congress of the European Hematology Association (EHA) will be replaced by a virtual edition.

 
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ERN-EuroBloodNet will be presenting two posters at European Conference on Rare Diseases & Orphan Products (ECRD) 2020!
 

“ENROL: The European Rare Blood Disorders Platform” and “ERN-EuroBloodNet: Establishment of the European Network of Sickle Cell Disease Patients Organizations” will be presented next 14-16 May

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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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EuroBloodNet

EuroBloodNet
Hôpital St Louis / Université Paris 7
1 avenue Claude Vellefaux
75475  
PARIS, France
coordination@eurobloodnet.eu
 
 
 

ERN-EuroBloodNet is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are supported by the European Commission. For more information about the ERNs and the EU health strategy, please visit http://ec.europa.eu/health/ern

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© EuroBloodNet 2020