Newsletter - November 2020

Keep informed about the latest information on Rare Hematological Diseases!

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

​​​​​​​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 innov

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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Sickle Cell Disease patients and parents’ patients Educational Session at ASCAT 2020, a joint project of ERN-EuroBloodNet, ASCAT and BSH

The SCD Patient Educational Session at ASCAT has provided for the second year the perfect opportunity for patients to experience how important is to participating in Research’s Agenda, while demonstrated the that the medical profession is willing to change and listen to the patient voice.

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ERN-EuroBloodNet repository of Clinical Practice Guidelines and Other Clinical Decision Making Tools are searchable at the new website section!

A total of 117 GPGs and other CDMTs have been compiled for the six subnetworks, from which 68 have been classified on Quality Domains. Check now the new repository released, including a search tool for their findability on Subnetwork, Disease group, Scope and Purpose and Rigour of Development approach!

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Important change in the webinar program Topic on Focus: Cutaneous Lymphoma

The 14th of December will take place the last Topic on Focus: Cutaneous Lymphoma webinar, where the sessions on New therapeutic developments I and New therapeutic developments II will be combined in one

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