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State of Health in the EU

November 27, 2017

28 Country Health Profiles have been published by the Commission that provide a depth analysis of EU Member States' health systems by analysing health of the population, important risk factors and show the effectiveness, accessibility and resilience of health systems in each EU member state. The reports reflect shared objectives across the member states, and reveal potential areas where the Commission can encourage mutual learning and exchange of good practices.

ERN-EuroBloodNet 1st Board of the Network meeting!

November 20, 2017

ERN-EuroBloodNet 1st Board of the Network meeting was successfully held last November 10th in Paris with more than 70 attendants.
This meeting has been crucial for explaining ERN-EuroBloodNet members what has been done since the official approval of ERNs last March and how they will be involved in the coming tasks.

ERN-EuroBloodNet Dissemination material is already available!

November 13, 2017

 ERN-EuroBloodNet Dissemination material have been produced with the aim of promoting the participation of European health professionals, patients, health authorities and other stakeholders in the common objective of improving healthcare and quality of life of patients affected by Rare Hematological Diseases. In this context, ERN-EuroBloodNet flyer and leaflet will be distributed in face to face meetings, congresses, symposia and other events

Diagnosis and treatment of endocrine complications of thalassemic youth and young adults for a better quality of life

October 2, 2017

The aims of EQUALITY Project is to prepare a guide including regular following up patients, to train doctors and to maintain better quality life for thalassemic patients, under the guide and supervision of Prof. Dr.Vincenzo de Sanctis, coordinator of the International Network ComplicationsEndocrine in Thalassemiaan Adolescent Medicine (ICET-A) and consultant in Pediatricsand Adolescent Medicine at Quisisana Hospital of Ferrara (Italy). The second translational Project Meeting took place in September 2017, attended by Prf. J.L. Vives Corrons and  Dr. R. Colombatti.

5th International Summer School on Rare Diseases and Orphan Drug Registries

September 28, 2017

The "5th International Summer School on Rare Diseases and Orphan Drug Registries" was held last 18-22 September in Rome with the aim to promote the establishment of Findable, Accessible, Interoperable, Reusable (FAIR) Rare Disease (RD) registries in compliance with IRDiRC and EU Recommendations.

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Agenda

EURORDIS Black Pearl Award

February 20, 2018

Brussels, Belgium

The EURORDIS Black Pearl Awards is an annual event held in Brussels to recognise the outstanding achievements and exceptional work of people making a difference for the rare disease community. The black pearl symbolises these unique individuals, organisations and companies who demonstrate an incredible combination of hard work and dedication in their daily lives.  

 EURORDIS Rare Disease Europe

2018 BMT Tandem Meetings ​

February 21-25, 2018

Salt Lake City, Utah

 The BMT Tandem Meetings are the combined annual meetings of the CIBMTR and the ASBMT. Physicians with a clinical interest in blood and marrow transplantation and related investigations, laboratory technicians, clinical research professionals, pharmacists, nurses, data managers, BMT center administrators and other allied health professionals benefit from the full scientific program that addresses the timely issues in Hematopoietic Stem Cell Transplantation.

 ASBMT (American Society for Blood and Marrow Transplantation) CIBMTR (Center for International Blood and Marrow Transplant Research)

ESH - GR-EX 2nd International Symposium on Red Blood Cells: Genesis and Pathophysiology

April 18-20, 2018

Paris, France

The course has two major learning objectives, one related to improving our understanding of the red blood cell as a key player in human physiology, the other to developing high quality research projects on red cells. The course is designed to cover the three stages of the red cell life: differentiation, circulation and senescence, both in health and disease. The following topics will be addressed: Intrinsic and extrinsic mechanisms that control red blood cell differentiation Physiology and metabolism of the mature red blood cell Genetic and infectious diseases affecting red cell functions Transfusion, blood banking and storage lesions Emergent therapies in red cell disorders

 ESH (European School of Haematology)

European Conference on Rare Diseases & Orphan Products 2018 (ECRD)

May 10-12, 2018

Vienna, Austria

 The 2018 theme Rare Diseases 360° – collaborative strategies to leave no one behind reinforces the unique role the conference plays to bring together and facilitate effective 360° policy discussions between all members of the rare disease community. Sessions at the conference will focus on six sub-themes.

EURORDIS Rare Disease Europe

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