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New video on European Reference Networks: a ray of hope for patients with rare and complex diseases, their families and doctors

June 29, 2017

In 2017 over 900 highly-specialised medical teams from all over Europe joined their forces in the European Reference Networks (ERNs). Watch the new video produced by the European Commission where doctors and patients explain how the ERNs can tackle complex or rare diseases!

EuroBloodNet was present at the 2nd ERN Coordinators Group Meeting and at the EHA Annual Congress

June 27, 2017

The Joint meeting of the ERN Board of Member States (BoMS) and the ERNs coordinators group and the Second European Reference Networks (ERNs) Coordinators Group Meeting were held las 20th and 21st June 2017 in Brussels under the organization of the European Commission. After both meetings, EuroBloodNet was also present at the European Hematology Association Annual congress 2017 in Madrid, where the Scientific and Strategic Board took the opportunity to briefly join for presenting what was agreed during the ERNs coordinators group meeting and next steps discussion. 

The guideline document "Standard procedure and guide for the coding with Orphacodes" has been produced by RD-Action

June 16, 2017

Guideline contains 6 recommendations adapted to different and well defined coding situations, i.e. for healthcare planning, for documenting the activity of expert centres, for statistical purposes, for research, for data exchange at the international level. This document is a major step towards the practical implementation of RD codification, necessary for interoperability between countries but also between different sources of data, coming both from care and research. Hopefully Member States, and countries beyond Europe can find here appropriate answers to questions posed by the challenge of RD coding, and find inspiration for real-life implementation.

Summer School to empower professionals to design and manage a rare disease registry

June 6, 2017

Registries represent essential tools for Rare Diseases to increase timely and accurate diagnosis, improve patients management, tailor treatments, facilitate clinical trials, support healthcare planning and speed up research, reasons for which their implementation have become a common objective to be achieved by the European Reference Network. The "5th International Summer School on Rare Diseases and Orphan Drug Registries", organized by the National Centre for Rare Diseases(ISS) aims to promote the establishment of FAIR RD registries in compliance with IRDiRC and EU Recommendations,

The 1st European Reference Networks (ERNs) Coordinators Group Meeting was held last 26th April

May 10, 2017

The first European Reference Networks (ERNs) Coordinators Group Meeting was held las 26th April 2017 in Brussels under the organization of the European Commission, where ERN EuroBloodNet was represented by Prof. Béatrice Gulbis (ERN co-coordinator) and Victoria Gutiérrez Valle (ERN IT and dissemination manager), both of them previous members of ENERCA project. During the fruitful meeting several key transversal issues concerning all the ERNs were discussed. The 2nd ERNs Coordinators Group will take place next June 2017.

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Agenda

New therapeutic perspective for Thalassaemia and Sickle Cell Disease

September 13, 2017

Firenze, Italy

The conference, which sees the presence of the most important specialists and researchers engaged in the study of these pathologies for many years, will focus on how the quality of life of the patient with thalassemia has changed over the years, what are the goals of new therapies And what novelties about prevention coming from scientific research. Particular attention will be given to the new and encouraging perspectives of gene therapy and the innovative research on erythropoiesis modulation.

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

9th WORKSHOP ON PROFICIENCY TESTING IN ANALYTICAL CHEMISTRY, MICROBIOLOGY AND LABORATORY MEDICINE - Current Practice and Future Directions

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

This year the annual EQALM symposium and General Assembly will be held in Dublin, Ireland at the Crowne Plaza Dublin Airport Hotel on Thursday 19 and Friday 20 October 2017. The symposium includes the following topics: Microbiology EQA and community health Pre and post examination of microbiology EQA for developing countries Statistics in EQA Presentations of selected submitted abstracts The Adam Uldall lecture

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

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