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EHA-HARMONY COVID-19

June 4, 2020

 As long as COVID-19 constitutes a severe threat to patients and there is no effective medicine or vaccine available, it is crucial to collect large amounts of high-quality data. There is a need to standardize / harmonize data, in order to facilitate rapid analysis and support evidence-based decision-making. Currently, COVID-19 data is fragmented and siloed in poorly interoperable systems, requiring substantial curation to work with. During the live webinar and Q&A session, experts from Spain and Italy will be diving deeper into the topic and discussing the added value of clinical harmonized data, big data analytics tools and the HARMONY approach, in addressing today’s emerging needs. Speakers  *   Jesus Maria Hernandez Rivas Professor of Hematology, University of Salamanca, IBSAL, Hospital Universitario de Salamanca, Spain, HARMONY Coordinator   *   Guillermo Sanz Head of Hematology, Hospital Universitario La Fe, Valencia, Spain, HARMONY Co-Chair   *   Tiziano Barbui Scientific Director of the Research Foundation Ospedale Papa Giovanni XXIII, Bergamo, Italy

 The HARMONY Alliance<https://newsletter.ehaweb.org/click.html?x=a62e&lc=HnceCn&mc=z&s=VYhlRv&u=zIjiT&z=sM0mr7z&>, European Public-Private Partnership for Big Data in Hematology, and EHA invite you to participate in the upcoming webinar on The Power of Integrating Harmonized COVID-19 Patient Data in Hematology Research.

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Hemochromatosis: what's important and new in 2020?

Wed, Jun 10, 2020

Paris, France

Prof. Pierre BRISSOT

Pierre BRISSOT is Professor Emeritus of Medicine and full member of the French National Academy of Medicine. He was head of the Liver Diseases Department and of the Inseam research group "Iron and Liver" at the Rennes University Hospital. He was a visiting professor at the Universities of San Francisco and San Diego, and at Harvard Medical School (Boston). His work is essentially devoted to iron-related diseases, and particularly to hemochromatosis. He has founded (or co-founded) several national and international associations of patients with hemochromatosis. He is a past president of the French Association for the Study of the Liver and of the International BioIron Society.

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International Summer School on RD Registries and FAIRification of Data, ed. 2020

September 28 – October 2, 2020

The International Summer School on Rare Disease Registries and FAIRification of Data is a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP-RD). EJP-RD is a European Commission funded project (grant agreement No 825575, 2019 – 2023) with the goal “to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation”. For more information about the EJP-RD, see https://www.ejprarediseases.org/ In particular this Course is a part of the WP14 on “Data Management & Quality Training”, which aims to organize residential training courses in different Countries. WP and Task Leader: Dr. Claudio Carta, ISS. Course Director: Dr. Domenica Taruscio, ISS. The Course is made up of 5 days of training organized by Istituto Superiore di Sanità (ISS) in close collaboration with, mainly, EJP-RD task partners [LUMC & UoG (Endo-ERN), IOR (Bond-ERN), UUH (Metab-ERN), EURORDIS, ISCIII, LUMC, INSERM (RaDiCo), UMCG, DTL-Projects (EIXIR-NL), CNR (ELIXIR -IT), AMC]   ISS, has gained vast experience by organizing numerous courses focused on rare disease registries with the support of key partners. In particular since 2013 ISS has organized and hosted the “International Summer School on Rare Disease and Orphan Drug Registries” and since 2014 the “Bring Your Own Data To Link Rare Disease Registries”. Due to the force majeure situation, COVID19, the international course will be held ONLINE  Registration is possible for: - the entire course (“Rare Disease Registries and FAIRification of Data”, September 28-October 2, 2020). - the first training module (“Rare Disease Registries”, September 28-30, 2020) ∙ the second training module (“FAIRification of Data”, October 1-2, 2020)        

 EUROPEAN JOINT PROGRAMME ON RARE DISEASES

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BONE MARROW FAILURE DISORDERS: From the cell to the cure of the disease

November 13-15, 2020

Paris, France

Tim Brümmendorf, Inderjeet Dokal, Carlo Dufour, Régis Peffault de Latour, Marc H.G.P Raaijmakers, Neal Young

 ABOUT THE CONFERENCE: On behalf of the European School of Haematology and the Severe Aplastic Anaemia Working Party of the European Society for Blood and Marrow Transplantation (EBMT), we are very pleased to invite you to this Translational Research Conference on Bone Marrow Failure Disorders (BMF). An outstanding faculty of distinguished global experts will present the most recent advances in the field, from the pathophysiology to the diagnosis and therapy of inherited BMF disorders, idiopathic Aplastic Anaemia and Paroxysmal Nocturnal Haemoglobinuria. MAIN TOPICS:   - Stem cell biology: from stress to failure   - Constitutional marrow failure 1: Fanconi Anaemia    - Constitutional marrow failure 2: Ribosome diseases   - Constitutional marrow failure 3: Telomere biology diseases    - Immune Aplastic Anaemia and PNH 1: Pathophysiology and diagnosis    - Idiopathic Aplastic Anaemia and PNH 2: Differential diagnosis and clonal evolution    - Treatment of immune Aplastic Anaemia    - Treatment of PNH   - Emerging areas and new challenges Deadline for applications: September 3, 2020

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