ERN-EuroBloodNet will be present at the ECRD 2024!
The 12th Edition will be held from 15th to 16th May 2024 and fully hybrid.
The 12th edition of the European Conference on Rare Diseases & Orphan Products (ECRD) is coordinated by EURORDIS and co-organized by Orphanet. This fully hybrid conference will take place on 15 & 16 May 2024 online and at The Square in Brussels.
Get ready for the next ECRD and check out the full programme and don’t forget to perform your registration!
The ECRD brings together people with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicians, regulators and Member State representatives, to shape goal-driven rare disease policies of the future.
ERN-EuroBloodNet will be part of this event through the participation of Mariangela Pellegrini (Educational & Patients Program Manager) and Victoria Gutiérrez Valle (Scientific Manager) in the poster session.
Mariangela will be speaking the 16th on a panel about “Innovative Therapies, Unequal Access: Bridging the gap for rare disease treatments”. Additionally, she will present a poster regarding to "ERN-EuroBloodNet facilitating access to cross-border healthcare for patients with rare hematological diseases in the European Union" giving information about how to deal with Cross Border Health Procedures, about healthcare providers' expertise and treatments access.
Victoria will present a poster on the European Rare Blood Disorders Platform (ENROL), the central patient registry of ERN-EuroBloodNet, and its role on Advancing Translational and Clinical Research in Hematology. The poster willl present the ENROL ongoing collaborations with 3 EU registries for the sharing of pseudonymised individual data, including RADeep (rare anaemia disorders), EU-BLAST (blastic plasmacytoid dendritic cell neoplasm) and TWIST (Von Willebrand Disease). Furthermore ENROL links with 3 EU-funded research projects GenoMed4All, SYNTHEMA and IMPACT-AML will be also detailed as key examples to develop federated European platforms for the re-use of clinical and multi-omics data for the development of artificial intelligence algorithms, anonymization of clinical data, generation of synthetic data, and diagnosis and prediction of risk of hematological diseases.
This conference will feature subtitles in 12 languages, reducing the barries for all participants, including Spanish, Portuguese, German, French, Italian, Polish, Romanian, Dutch, Greek, Hungarian, Czech and Danish.