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The EC publishes two guides on Patient Blood Management for safe and rational use of blood/blood products avoiding unnecessary transfusions

April 19, 2017

Patient blood management is a patient-focused, evidence-based and systematic approach to improve patient outcomes through the safe and rational use of blood and blood products and avoiding unnecessary transfusions. European Commission has published two guides on Patient Blood Management, one addressed to health authorities and the other is a practical implementation guide for hospitals.  

Rare Lives, the photographic journey that aims to investigate needs, hopes, difficulties, but above all, joys and daily achievements of those living a "Rare Life"

March 24, 2017

Rare Lives project wants to give the 30 million people living with a rare disease in Europe the visibility and strength, raising awareness and attention of the citizenship on rare diseases through the construction of a network which combines the experiences of those living the condition of rare patient and those who are not. Take a look on the journal!

Watch the European Reference Networks video, flyer and brochure!

March 15, 2017

After the kick off conference held last 9th and 10th March in Vilnius, a set of dissemination material (flyer, brochure and video) have been prepared by the European Commission with the aim of rising awareness on the meaning, objectives and expected outcomes of the 24 ERNs. 

EuroBloodNet, the European Reference Network on Rare Hematological Diseases, awarded by the EC as one of the approved ERNs

March 11, 2017

The first 24 ERNs approved last December were awarded  in a two-day conference held 9th-10th March in Vilnius organized by the European Commission and the Maltese Presidency of the Council and hosted by the Ministry of Health of Lithuania with more than 600 participants. The ERNs cover 24 clinical areas and bring together more than 313 hospitals and almost 1000 healthcare units of expertise across 25 EU countries and Norway. One of the approved networks has been EuroBloodNet, the ERN on Rare Hematological Diseases, resulting from joint efforts of the European Hematology Asssociation (EHA), and ENERCA.

Orphanet releases its new website celebrating its 20th anniversary

March 10, 2017

Orphanet was established in France by the INSERM (French National Institute for Health and Medical Research) in 1997 with the aim to provide high-quality information on rare diseases, and ensure equal access to knowledge for all stakeholders. Celebrating its 20th anniversary, Orphanet has enveiled its new website with an easier navigation and reading and searching options and responsive design. Check it out in !

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22nd European Hematology Association Annual Congress

June 22-25, 2017

Madrid, Spain

The EHA Annual Congress provides a forum for presenting original unpublished data and sharing ideas for hematological innovation as well as disseminating evidence-based knowledge of primary clinical relevance. Hematologists and affiliated professionals attending the EHA Congress will be able to: Enhance their knowledge of evidence-based approaches on 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.

European Hematology Association (EHA)  

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

September 18-22, 2017

Rome, Italy

The International Summer school intend i) to promote the establishment of Findable, Accessible, Interoperable, Reusable (FAIR) registries in compliance with IRDiRC and EU Recommendations and ii) to support cooperation among different registry stakeholders and coordination with registries that are developed within European Reference Networks and National Plans in the EU.

Istituto Superiore di Sanità


October 9-10, 2017

Portorož, Slovenia

As in previous workshops, proposed abstracts will be subjected to approval by the scientific committee and amended where necessary to improve English expression. Invited lectures and accepted communications/posters will be considered for publication as full papers as a topical focus in an issue of Accreditation and Quality Assurance (Springer Verlag), subject to peer-review.

EURACHEM in cooperation with CITAC and EQALM

EQALM 2017 Symposium and General Assembly

October 19-20, 2017

Dublin, Ireland

The next EQALM symposium and General Assembly will be held in Dublin, Ireland on 19-20 October, 2017. Futher details will be published when available.

European Organisation for External Quality Assurance Providers in Laboratory Medicine (EQALM)



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