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Rare Anaemias Disorders European Epidemiological Platform (RADeep)

January 15, 2018

The Rare Anaemias Disorders European Epidemiological Platform (RADeep) is currently being implemented as a joint venture conceived in the core of ERN-EuroBloodNet to become an umbrella for both new and already existing European patients’ registries in rare anaemias (RAs). We are very happy to anounce the launch of RADeep website! 

Winners of the EURORDIS Black Pearl Awards 2018!

January 15, 2018

 The EURORDIS Black Pearl Awards are presented to the stars of the rare disease community - patient advocates, organisations, policy makers, scientists, companies and media - for their major achievements and their outstanding commitment to the rare disease cause. There were over 350 nominations, representing 37 different countries worldwide. The recipients of the EURORDIS Black Pearl Awards 2018 have been already announced!

Rare Disease Day 2018 is approaching! Show your rare. Show you care.

January 11, 2018

Continuing on from Rare Disease Day 2017, the theme of this year is Research. Rare disease research contributes to the development of diagnostic tools, treatments and cures, as well as improved health and social care for patients and their families. Take part in an interactive face paint social media campaign to raise awareness of rare diseases and show your support for the rare disease community! Show your rare. Show you care.

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.

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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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