Newsletter - November 2019

Keep informed about the latest information on Rare Hematological Diseases!

3rd ERN-EuroBloodNet Board of Network meeting took place 13th and 14th November with more than 80 participants, thanks to all!

The ERN-EuroBloodNet annual meeting took place in Vall d'Hebron University Hospital, Barcelona

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LAST 2 POSITIONS AVAILABLE for EuroBloodNet Preceptorships for health professionals on Aplastic Anaemia and Paroxysmal Nocturnal Hemoglobinuria!

EuroBloodNet is endorsing three Preceptorships programs to provide applicants with the fundamental tools for a correct diagnostic and treatment approach to bone marrow failures, including AA and PNH in children, adolescents and adult patients.

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Sickle Cell Disease Research Prioritisation Workshop at ASCAT 2019, a joint project of ERN-EuroBloodNet and ASCAT with a "Top 10" priorities on research from patients' perspective

The meeting has provided the perfect opportunity for patients to experience what Patient and Public Involvement is while demonstrated the that the medical profession is willing to change and listen to the patient voice.  

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First gene therapy trial to treat severe pyruvate kinase deficiency (PKD) is now open for enrollment!

An open-label, phase 1 gene therapy study consisting of autologous hematopoietic stem and progenitor cells (HSPCs) transduced ex vivo with a lentiviral vector encoding for the PK enzyme is now enrolling patients

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European Conference on Rare Diseases & Orphan Products (ECRD) will take place 15-16 May in Stockholm, shape the future for people living with a rare disease! 

Be part of the global rare disease community at ECRD 2020. Submission of poster abstracts is available until 10th February!

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The Conference on Global Globin 2020 Challenge Conference 2019 was held 28th-30th October at the UNESCO with the participation of several EuroBloodNet experts

All abstracts of presentations will be published in the upcoming Hemoglobin Journal, including “EuroBloodNet: A European Reference Network for Rare Blood Diseases and a Model for Emulation”

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“Gain-of-function mutations in PIEZO1 directly impair hepatic iron metabolism via the inhibition of the BMP/SMADs pathway” shows a link between PIEZO1 and iron metabolism

The paper has been published in the American Journal of Hematology with the participation of EuroBloodNet experts

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RELEVANCE (Regulation of red cell life-span, erythropoiesis, survival, senescence and clearance) Marie-Curie ITN project is coming to an end after training 15 early stage researchers

RELEVANCE results provides the basis for the new Marie Curie - ITN EVIDENCE (Erythrocytes properties and viability in dependence of flow and extra-cellular environment) which is already recruiting students

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