News | Eurobloodnet.eu

Make your voice heard: new Rare Barometer Voices survey on rare disease patients’ experience of treatments is now open!

2019-03-21

The initiative will get an insight into which treatments and cures are available to people living with a rare disease, if they are accessible, and how they experience their treatment and cure. Survey is open until 30th April!

Flyer and poster for patients and Health professionals now available in all languages!

2019-03-19

New ERNs dissemination material addressed to patients and health professionals has been produced by the EC and translated to all EU languages. Moreover a new video will be also soon released.

The European Platform on Rare Disease Registration has been launched!

2019-03-11

Information about rare disease patients is spread in hundreds of registries across Europe. The EU Rare Disease Platform will make registries' data searchable at EU level and promote the standardization of data sharing.

Rare Disease Models and Mechanisms-Europe registry open for registration

2019-02-19

"Solve-RD – Solving the unsolved Rare Diseases" is a large European research project collaborating with ERNs to improve the diagnosis of rare diseases

EURORDIS Black Pearl Awards 2019

2019-02-15

The 8th edition of the EURORDIS Black Pearl Awards took place on 12 February 2019 in Brussels. Congratulations to the winners!

#ProtectERNs - The impact of Brexit from the Patients affected by Rare Hematological perspective

2019-02-07

ERN-EuroBloodNet ePAGs Maria Piggin and Sophie Wintrich, both based in London, support rare hematological disease communities in the UK

Rare Disease Day 2019 "Bridging health and social care": Get involved!

2019-01-30

Nex 28th February, the 12th edition of Rare Disease Day will focus on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease face every day.

Cross-border healthcare: are EU citizens aware?

2019-01-25

"As legislation that clearly impacts EU citizens, it should be better known", Andrzej Rys, Director responsible for health systems, medical products and innovation, Directorate-General for Health and Food Safety, European Commission

"Addressing the diagnostic gaps in pyruvate kinase deficiency: Consensus recommendations on the diagnosis of pyruvate kinase deficiency" Published under the endorsement of ERN-EuroBloodNet

2018-12-03

Recommendations has been published at the Amerian Journal of Hematology under the endorsement of the network and with the participation of a high number ERN-EuroBloodNet members representatives and experts

Summary report and Video recording of the 4th Conference on European Reference Networks available!

2018-11-27

The fourth Conference on European Reference Networks (ERNs) took place 21-22 November in Brussels

"ESH International Conference on Erythropoiesis Control and Ineffective Erythropoiesis: from Bench to Bedside" will take place on 2019, March, 15-17, in Budapest

2018-11-19

Organized by the European School of Hematology (ESH), the main objective of this conference is to translate recent, novel data from basic research on the origin and developmental control of mega/erythroid progenitors in haematopoiesis to clinical practice

ERN-EuroBloodNet 2nd Board of the Network meeting was successfully held with the participation of more than 70 attendants!

2018-11-12

The meeting represented a big step forward on the network consolidation with the presentation of 16 concrete projects focused on the different Transversal Fields of Action and rare hematological diseases areas where members are already actively involved

Dr. Franz Schaefer, Chair of the Coordinators of the 24 ERNs, has answered key questions on present and future of ERNs

2018-10-26

One of the biggest challenges, says Schaefer, is getting local, regional and national healthcare providers to make ample use of this unique resource.

"Newborn screening for sickle cell disease in Europe: recommendations from a Pan‐European Consensus Conference" has just been published with the endorsement of ERN-EuroBloodNet

2018-10-18

Recommendations has been published at the British Journal of Hematology under the endorsement of the network and with the participation of a high number ERN-EuroBloodNet members representatives and experts

The special supplement on the 9th European Conference on Rare Diseases & Orphan Products (ECRD) is now available!

2018-10-18

Special supplement for the ECRD Vienna 2018 has been published on the Orphanet Journal of Rare Diseases including all the abstracts submitted to the congress

The 2nd ERN-EuroBloodNet Board of the Network meeting will take place the 8th November in Paris!

2018-10-17

If you are an ERN-EuroBloodNet member and are willing to attend, please contact us!

ERN-EuroBloodNet member Vall d'Hebron will become the headquarters of the International Conference of Rare Diseases and Orphan Drugs (ICORD)

2018-10-17

Vall d'Hebron Barcelona Hospital Campus will become the new headquarters and coordinator of the International Conference of Rare Diseases and Orphan Drugs (ICORD) from January 2019

ERN-EuroBloodNet Disease Search Tool release!

2018-10-10

The engine searches experts based on the information gathered through the Experts’ profile, offering the possibility of searching either by specific disease through the ORPHA classification, or by subnetwork, while including different additional filters

Five ERN-EuroBloodNet centers have successfully passed the second wave of assessment carried out by ACSA

2018-10-04

Five ERN-EuroBloodNet Centers were selected to undergo the technical assessment by ACSA, being one of them also selected for the on-site audit. Congratulations to all!

4th ERN-EuroBloodNet Scientific and Strategic Board Meeting

2018-10-02

The 4th ERN-EuroBloodNet Scientific and Strategic Board Meeting was held last 27th September in Brussels for the presentation of the state of the art of network implementation and discussion of next steps

4th Conference on European Reference Networks, "ERNs in action" will take place on 21&22 November 2018 in Brussels

2018-09-06

With the involvement of the main ERNs stakeholders, including ERNs representatives, policy makers, national authorities, scientific communities and patients associations, the Conference represents the perfect environment for brainstorming

RD-Connect invites ERN members to join the RD-Connect Community

2018-08-31

In July 2018 the new RD-Connect Community was launched as an international association of individuals and organizations who would like to participate in shaping the rare disease field, promote data sharing and reuse and advance research.

Joint Action on Rare Cancers (JARC) and ERNs

2018-08-21

JARC works closely with the European Reference Networks (ERNs) to integrate and maximise the efforts of the European Commission, Member States and all other stakeholders with the aim of improving quality of care, and research on rare cancers

RD-Connect announces educational webinar series for ERN Stakeholders

2018-08-20

RD-Connect is organising a series of webinars aiming to train ERN members on RD-Connect tools designed to help clinicians and researchers study and diagnose rare diseases.

ERN video clip now available in all EU languages

2018-08-19

The European Reference Networks video is now available in all EU languages (except Gaelic) and Norwegian!

ERN-EuroBloodNet interactive session at EHA Annual Congress

2018-06-26

Taking advantage of the biggest congress on hematology in Europe, ERN-EuroBloodNet members representatives and patients' advocates attending the congress met together during an interactive session on Friday 15th June

Health policies in EU budget 2021-2027

2018-06-04

The European Commission adopted last May a legislative proposal for a new European Social Fund Plus (ESF+) Programme

Release of "Plaza" at the ERNs Collaborative Platform

2018-06-04

'Plaza' is the Spanish word for city square and this is exactly what we want it to be: a vibrant, central place in a community where people can come together, meet, connect and collaborate.

3rd ERN-EuroBloodNet Scientific and Strategic Board Meeting

2018-04-10

3rd ERN-EuroBloodNet Scientific and Strategic Board Meeting was held last 5th April in Brussels for the analysis of the current state of the art of the different actions implemented by the network and discuss next steps

European Reference Networks one year anniversary

2018-03-12

ERNs after first year of activity

Rare Disease Day 2018 is approaching! Show your rare. Show you care.

2018-02-02

28 February 2018 will be the eleventh international Rare Disease Day coordinated by EURORDIS

Winners of the EURORDIS Black Pearl Awards 2018!

2018-01-15

Stars of the rare disease community recognised for their efforts through the EURORDIS Black Pearl Awards.

Rare Anaemias Disorders European Epidemiological Platform (RADeep)

2018-01-15

The umbrella for both new and already existing European patients’ registries in rare anaemias

ERN-EuroBloodNet 1st Board of the Network meeting!

2017-11-20

The 1st BoN meeting was successfully held last November 10th in Paris

ERN-EuroBloodNet Dissemination material is already available!

2017-11-13

Check the new leaflet and flyer!

ERN-EuroBloodNet 2nd Scientific and Strategic Board Meeting

2017-09-12

The meeting was held in Brussels last 6th September

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

2017-06-29

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

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

2017-06-27

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

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

2017-06-16

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

Watch the European Reference Networks video, flyer and brochure!

2017-03-15

Share. Care. Cure.

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

2017-03-11

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