Zobrazeno 1 - 10
of 22
pro vyhledávání: '"People living with rare disorders"'
Autor:
Birute Tumiene, Harm Peters, Bela Melegh, Borut Peterlin, Algirdas Utkus, Natalja Fatkulina, György Pfliegler, Holm Graessner, Sanja Hermanns, Maurizio Scarpa, Jean-Yves Blay, Sharon Ashton, Lucy McKay, Gareth Baynam
Publikováno v:
Orphanet Journal of Rare Diseases, Vol 17, Iss 1, Pp 1-20 (2022)
Abstract 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 effi
Externí odkaz:
https://doaj.org/article/6407632929da40bb8a36b39315418770
Akademický článek
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Autor:
Douglas, Joanne T.
Publikováno v:
Journal of Palliative Care; Jul2023, Vol. 38 Issue 3, p276-281, 6p
Autor:
YASGUR, BATYA SWIFT
Publikováno v:
Neurology Reviews. 2023 Special Issue, Vol. 31, p6-12. 7p.
Autor:
Birute Tumiene, Harm Peters, Bela Melegh, Borut Peterlin, Algirdas Utkus, Natalja Fatkulina, György Pfliegler, Holm Graessner, Sanja Hermanns, Maurizio Scarpa, Jean-Yves Blay, Sharon Ashton, Lucy McKay, Gareth Baynam
Publikováno v:
Orphanet journal of rare diseases, London : BMC, 2022, vol. 17, art. no. 441, p. [1-20]
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 t
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::17ce5be43f66f2cbda0d5dc6bdf82ac0
Publikováno v:
Frontiers in Public Health, Vol 9 (2021)
The ongoing coronavirus disease 2019 (COVID-19) pandemic has disrupted every aspect of our life. The need to provide high-level care for an enormous number of patients with COVID-19 infection during this pandemic has impacted resourcing for and restr
Externí odkaz:
https://doaj.org/article/f66a27f2154e436887648fb9757a0365
Publikováno v:
Pain & Central Nervous System Week; 8/18/2023, p280-280, 1p
Autor:
Joanne T. Douglas
Publikováno v:
Journal of Palliative Care. :082585972110267
Frontotemporal disorders are a group of rare young-onset dementias for which there is no cure, nor is there any way to slow the underlying progressive brain degeneration. To date those affected have typically received very little, if any, follow-up c
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::66e01959c7d691bb427d9acad0c708fd
https://doi.org/10.1177/08258597211026711
https://doi.org/10.1177/08258597211026711