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

Guideline contains 6 recommendations adapted to different and well defined coding situations.

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.

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

The Summer School on Rare Diseases and Orphan Drugs registries aims to promote the establishment of FAIR Rare Disease Registries

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,

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

During the fruitful meeting several key transversally issues concerning all the ERNs were discussed

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.

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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

One is a practical implementation guide for hospitals and the other is addressed to health authorities

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.  

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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"

70 families from 7 European countries have participated in the project, take a look on the journal and follow on the media channels!

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!

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Watch the European Reference Networks video, flyer and brochure!

Share. Care. Cure.

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. 

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

The first 24 ERNs were awarded by the EC at the Kick off meeting held in Vilnius 9th March

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.

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Orphanet releases its new website celebrating its 20th anniversary

Orphanet new site facilitates navigation, reading and searching with its new design

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 www.orphanet.net !

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EURORDIS Awards 2017 for excellence in the field of Rare Diseases

Winners of the EURORDIS Awards 2017 were announced at the Black Pearl evening last 21st February in Brussels

February 24, 2017

The EURORDIS Awards & Black Pearl Evening is held every year to mark the occasion of Rare Disease Day and recognize outstanding patient advocates and organisations, volunteers, scientists, companies, media and policy makers who have contributed to reduce the impact of rare diseases on people's lives. This year, the winners of the EURORDIS Awards 2017 were announced at Black Pearl ceremony in Brussels on February 21st by Vytenis Andriukaitis, European Commissioner for Health and Food Safety. 

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28th February: Rare Disease Day 2017 is here!

'With research, possibilities are limitless'

January 31, 2017

As every year, this 28th February Rare Disease Day will be held around the world with the aim of raising global awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. The Rare Disease Day 2017 theme is research and the slogan is “With research, possibilities are limitless”. Get involved with Rare Disease Day 2017!

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