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001-es BibID:	BIBFORM115092
035-os BibID:	(cikkazonosító)441 (Scopus)85144302736 (WoS)000901045700001
Első szerző:	Tumiene, Birute
Cím:	Rare disease education in Europe and beyond : time to act / Tumiene Birute, Peters Harm, Melegh Bela, Peterlin Borut, Utkus Algirdas, Fatkulina Natalja, Pfliegler György, Graessner Holm, Hermanns Sanja, Scarpa Maurizio, Blay Jean-Yves, Ashton Sharon, McKay Lucy, Baynam Gareth
Dátum:	2022
ISSN:	1750-1172
Megjegyzések:	People living with rare diseases (PLWRD) still face huge unmet needs, in part due to the fact that care systems are not sufficiently aligned with their needs and healthcare workforce (HWF) along their care pathways lacks competencies to efficiently tackle rare disease-specific challenges. Level of rare disease knowledge and awareness among the current and future HWF is insufficient. In recent years, many educational resources on rare diseases have been developed, however, awareness of these resources is still limited and rare disease education is still not sufficiently taken into account by some crucial stakeholders as academia and professional organizations. Therefore, there is a need to fundamentally rethink rare disease education and HWF development across the whole spectrum from students to generalists, specialists and experts, to engage and empower PLWRD, their families and advocates, and to work towards a common coherent and complementary strategy on rare disease education and training in Europe and beyond. Special consideration should be also given to the role of nurse coordinators in care coordination, interprofessional training for integrated multidisciplinary care, patient and family-centered education, opportunities given by digital learning and fostering of social accountability to enforce the focus on socially-vulnerable groups such as PLWRD. The strategy has to be developed and implemented by multiple rare disease education and training providers: universities, medical and nursing schools and their associations, professional organizations, European Reference Networks, patient organizations, other organizations and institutions dedicated to rare diseases and rare cancers, authorities and policy bodies.
Tárgyszavak:	Orvostudományok Elméleti orvostudományok idegen nyelvű folyóiratközlemény külföldi lapban folyóiratcikk
Megjelenés:	Orphanet Journal of Rare Diseases. - 17 : 1 (2022), p. 1-20. -
További szerzők:	Peters, Harm Melegh Béla Peterlin, Borut Utkus, Algirdas Fatkulina, Natalja Pfliegler György (1949-) (belgyógyász, hematológus, labor szakorvos) Graessner, Holm Hermanns, Sanja Scarpa, Maurizio Blay, Jean-Yves Ashton, Sharon McKay, Lucy Baynam, Gareth
Internet cím:	Szerző által megadott URL DOI Intézményi repozitóriumban (DEA) tárolt változat
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