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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, were 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.

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!

More news



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)

14th International Conference on Thalassaemia and Haemoglobinopathies and 16th TIF International Conference for Patients and Parents

November 17-19, 2017

Thessaloniki, Greece

The exquisite and innovative Scientific Programme will cover a broad range of topics focusing on new advances and innovative treatment methods thalassaemia and other haemoglobinopathies, as well as expert sessions dedicated to clinical management and multidisciplinary care. Furthermore, the Patients Programme will seek to empower, educate and inform representatives of national thalassaemia associations from over 50 countries, on issues of crucial importance.

Thalassaemia International Federation (TIF)



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