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Palliative care for children and adults with inherited metabolic disease in Europe
Anja Lee, Yngve Thomas Bliksrud, Michela Onali, Julia Neugebauer, Francois Eyskens, Urh Grošelj, Mojca Žerjav-Tanšek
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Oznake: palliative care;quality of life;patients;paediatric palliative care;inherited metabolic diseases;genetic disorders;MetabERN;The European Reference Network for Hereditary Metabolic Disorders;
Palliative care should be an integral part of follow-up for patients with life-limiting/life-threatening conditions, irrespective of age and diagnosis. Many patients with inherited metabolic disorders (IMD) have palliative care needs due to multi-systemic conditions without curative treatment option ...
Leto: 2025 Vir: Digitalni repozitorij raziskovalnih organizacij Slovenije
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