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Major European Grant for New Research Program: Solve-RD

February 2, 2018

The Solve-RD research program is a project funded by the EU’s Horizon 2020 that will directly involve the European Reference Networks (ERNs) in order to diagnose currently undiagnosed rare disease patients using the latest in genetic technologies.

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

February 2, 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.

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!

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.

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Agenda

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

EHA 23rd Annual Congress

June 14-17, 2018

Stockholm, Sweden

The EHA Annual Congress is a forum for original unpublished data, for sharing ideas about hematological innovation, as well as for disseminating evidence-based knowledge of primary clinical relevance. Hematologists and affiliated professionals will be able to: Enhance their knowledge of evidence-based approaches to diagnosis and treatment for hematologic diseases. Access the latest results on clinical and translational research in hematologic disorders. Be updated on emerging innovative techniques, diagnostic tools and risk-assessment strategies in hematology and its subspecialties. Communicate, collaborate and network with representatives of a large international audience – medical professionals, national hematology societies, patient groups, medical industry and the media.

EHA (European Hematology Association)

37th World Congress ISH 2018

September 13–17, 2018

Vancouver, Canada

International Society of Hematology (ISH)

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