The European Medicines Agency (EMA) hosted a workshop in November 2019 to discuss aspects that should be considered by all stakeholders to facilitate the use of data collected by cancer registries, as core data elements, quality assurance measures among other considerations.
Guidelines will help national, regional and local authorities, through a wide range of existing policies and schemes, to enhance cross-border healthcare for patients suffering from COVID-19, but also for other pathologies, with a view to relieve the burden placed on health systems.
The ITHANET portal is an expanding resource for clinicians and researchers dealing with haemoglobinopathies by integrating information on database of variations (IthaGenes), epidemiology (IthaMaps) and HPLC data (IthaChrom), and also now gene-ranking metric IthaScore
The correct treatment and management of infection by Coronavirus (COVID-19) in patients affected by Rare Hematological Diseases may be challenging given the rapid spread of the pandemia and limited literature so far
The correct treatment and management of these patients may be challenging given the rapid spread of the pandemia and lack of literature so far. At this crucial stage, efforts are being devoted by different initiatives for the generation of indications
The study, funded by the EU, was produced under the EU Third Health Programme (2014-2020) and is exploring the options to set up a European expert network on rare diseases in the context of mobility and globalisation, with the purpose of improving healthcare provision. The study takes into account different operational, funding and sustainability criteria
ERN-EuroBloodNet is proud to collaborate with Europe Lymphoma Coalition on a Cutaneous Lymphoma comprehensive webinar program addressed to patients associations and patients advocates that will be tailored based on the results
Commission website (Europa) now hosts a searchable interface with details about ERNs for the public to search, including multi-lingual factsheets about ERNs and locations of members and partner centres.
First preceptorship has been hosted by AP-HP, Hôpital Saint-Louis under the coordination of Prof Regis Peffault de la Tour. 3 participants from Czech Republic, Lithuania and United Kingdom have benefited from this short stays and have shared with us their own experiences.
3rd ERN-EuroBloodNet Board of Network meeting was held last 13 and 14 November in Vall d'Hebron University Hospital, Barcelona, with the participation of more than 80 attendants and important new projects proposed for the upcoming period, check them!
ENROL is conceived in the core of ERN-EuroBloodNet as an umbrella for both new and already existing registries on rare hematological disorders, aiming at avoiding fragmentation of data by promoting the standards for patient registries' interoperability released by the EU RD platform.
The inaugural meeting of the GASCDO took place last 10th of January in Amsterdam, where ERN-EuroBloodNet presented the European Network of SCD Patients Organizations. ERN-EuroBloodNet is very proud of being part of this new start!
The ERN call for membership gives the possibility to the clinical units of European hospitals with appropriate expertise to join the current networks. The full assessment process will now commence and is expected to last a year
EuroBloodNet has contributed in this edition with the story of support provided to a ERASMUS student to benefit from cross-border mobility healthcare rights and the collaboration with EURORDIS for the establishment of the European Network of Sickle Cell Disease Patients Organisations
An open-label, phase 1 gene therapy study consisting of autologous hematopoietic stem and progenitor cells (HSPCs) transduced ex vivo with a lentiviral vector encoding for the PK enzyme is now enrolling patients
EuroBloodNet is endorsing three Preceptorships programs to provide applicants with the fundamental tools for a correct diagnostic and treatment approach to bone marrow failures, including AA and PNH in children, adolescents and adult patients.
RELEVANCE results provides the basis for the new Marie Curie - ITN EVIDENCE (Erythrocytes properties and viability in dependence of flow and extra-cellular environment) which is already recruiting students
The meeting has provided the perfect opportunity for patients to experience what Patient and Public Involvement is while demonstrated the that the medical profession is willing to change and listen to the patient voice.
Erythrocytes properties and viability in dependence of flow and extra-cellular environment (EVIDENCE) project is a Marie Curie – Innovative Training Networks, present your candidature until 31st December 2019!
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