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

October 2, 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. R. Colombatti.

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,

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59th ASH Annual Meeting & Exposition

December 9-12, 2017

Atlanta, USA

 Save the date for the world’s most comprehensive hematology event of the year, the 59th ASH Annual Meeting and Exposition, in vibrant, fresh, and creative Atlanta. The meeting will provide an invaluable educational experience and the opportunity to review thousands of scientific abstracts highlighting updates in the hottest topics in hematology. Network with top minds in the field as well as a global community of more than 25,000 hematology professionals from every subspecialty.

American Society of Hematology (ASH)

37th World Congress ISH 2018

September 13–17, 2018

Vancouver, Canada

International Society of Hematology (ISH)



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