HPO provides a standardized vocabulary of phenotypic abnormalities encountered in human disease, becoming the standard for phenotypic abnormalities by diverse groups such as international rare disease organizations or registries
The “ERN Assessment manual for applicants: description and procedures”, the “ERN Assessment manual for applicants: operational criteria for the assessment of Healthcare Providers” and the “Specific criteria” documents have just been released by the EC for candidates to prepare their applications
The European Commission has produced the ERN newsletter aiming to inform the ERN community and interested external stakeholders on the last developments of the ERNs ecosystem while promoting cross-ERNs or cross-Member States ideas and experiences
"It is very important to have the voice from politics, authorities, stakeholders, but also from the patients’ themselves so they can meet together and share the actions they want to perform regarding the disease" B. Gulbis, EuroBloodNet co-coordinator
5th 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
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!
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.
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.
"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
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
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
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
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 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
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
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
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.
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
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