“Sickle cell disease landscape and challenges in the EU: the ERN-EuroBloodNet perspective” has been published at The Lancet Haematology!
The Viewpoint summarizes the role of ERN-EuroBloodNet to improve the overall approach and management of Sickle cell disease patients in EU through key actions developed by the network.
Sickle cell disease (SCD) is a hereditary multiorgan disease that is considered rare in the EU. Causing chronic health problems, SCD is a life-threatening disorder requiring numerous resources and multidisciplinary teams for correct diagnosis and management.
"Sickle cell disease landscape and challenges in the EU: the ERN-EuroBloodNet perspective" has been published in The Lancet Haematology as a result of the joint work within 12 EU Member States, all members of the ERN. The Viewpoint summarizes the role of ERN-EuroBloodNet to improve the overall approach and management of SCD patients in EU through key actions developed by the network on:
- Pooling of expertise, knowledge and best practices
- Development of training and education programmes
- Strategy for the systematic gathering and standardisation of clinical data through ENROL and RADeep and its reuse in clinical research in collaboration with two European Commission-funded initiatives, GenoMed4All and SYNTHEMA
- Epidemiology and research strategies from the implementation of the Rare Anaemia Disorders European Epidemiological Platform (RADeep)
26 ERN-EuroBloodNet health professionals and patients representatives have contributed to the manuscript, including: María del Mar Mañú Pereira, Raffaella Colombatti, Federico Alvarez, Pablo Bartolucci, Celeste Bento, Angelo Loris Brunetta, Elena Cela, Soteroula Christou, Anna Collado, Mariane de Montalembert, Laurence Dedeken, Pierre Fenaux, Frédéric Galacteros, Andreas Glenthøj, Victoria Gutiérrez Valle, Antonis Kattamis, Joachim Kunz, Stephan Lobitz, Corrina McMahon, Mariangela Pellegrini, Sara Reidel, Giovanna Russo, Miriam Santos Freire, Eduard van Beers, Petros Kountouris and Béatrice Gulbis.
Congratulations to all!!