You are here: Home > News & Agenda > News

News

Diagnosis and treatment of endocrine complications of thalassemic youth and young adults for a better quality of life

The EQUALITY project

October 2nd, 2017

The aims of EQUALITY Project is to prepare a guide including regular following up patients, to train doctors and to maintain better quality life for thalassemic patients, under the guide and supervision of Prof. Dr.Vincenzo de Sanctis, coordinator of the International Network ComplicationsEndocrine in Thalassemiaan Adolescent Medicine (ICET-A) and consultant in Pediatricsand Adolescent Medicine at Quisisana Hospital of Ferrara (Italy). The second translational Project Meeting took place in September 2017, attended by Prf. J.L. Vives Corrons and  Dr. Raffaella Colombatti.

Read more about "Diagnosis and treatment of endocrine complications of thalassemic youth and young adults for a better quality of life"

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

Watch the new video on ERNs and discover the heart of the networks!

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!

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

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

A brief Scientific and Strategic Board meeting took place at EHA congress for presenting what was agreed during the ERNs CG meeting and next steps discussion

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. 

Read more about "EuroBloodNet was present at the 2nd ERN Coordinators Group Meeting and at the EHA Annual Congress"

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.

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

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,

Read more about "Summer School to empower professionals to design and manage a rare disease registry"

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, 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.

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

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.  

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

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!

Read more about "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""

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. 

Read more about "Watch the European Reference Networks video, flyer and brochure!"

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.

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

Copyright © 2002 - 2017 Enerca

Co-funded by the Health Programme of the European Union.