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Wyniki wyszukiwania dla: Rare diseases
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Treating rare diseases with the cinema: Can popular movies enhance public understanding of rare diseases?
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Are rare diseases overlooked by medical education? Awareness of rare diseases among physicians in Poland: an explanatory study
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Ultra-rare ultra-care: Assessing the impact of caring for children with ultra rare diseases
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Knowledge and Attitudes of Future Healthcare Professionals Toward Rare Diseases
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Needs assessment study of rare diseases education for nurses and nursing students in Poland
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Medical students' knowledge and opinions about rare diseases: A case study from Poland
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Iranian future healthcare professionals’ knowledge and opinions about rare diseases: cross‑sectional study
PublikacjaBackground: Rare diseases are a new global health priority, requiring evidence-based estimates of the global prevalenceof diseases to inform public policymakers and provide a serious challenge to the healthcare system that must not be ignored. The purpose of this study is to investigate Iranian future healthcare professionals’ knowledge and opinions about rare diseases.Results: A total of 6838 students responded...
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Iranian future healthcare professionals' knowledge and opinions about rare diseases: cross-sectional study
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The Awareness of Rare Diseases Among Medical Students and Practicing Physicians in the Republic of Kazakhstan. An Exploratory Study
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Myeloperoxidase Modulates Inflammation in Generalized Pustular Psoriasis and Additional Rare Pustular Skin Diseases
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Parental experiences and needs of caring for a child with 22q11.2 deletion syndrome
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Rapid progressive idiopathic pulmonary arterial hypertension (RCD code: II-1A.1)
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OrphaGPT: An Adapted Large Language Model for Orphan Diseases Classification
PublikacjaOrphan diseases (OD) represent a category of rare conditions that affect only a relatively small number of individuals. These conditions are often neglected in research due to the challenges posed by their scarcity, making medical advancements difficult. Then, the ever-evolving medical research and diagnosis landscape calls for more attention and innovative approaches to address the complex challenges of rare diseases and OD. Pre-trained...
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Ultra-rare ultra-care: The unique burden of ultra rare disease caregiving
PublikacjaBackground: We sought to assesses the impact of caring for children with ultra rare diseases (URDs) on familycarers and to analyse the way these experiences differ among the caregivers of children diagnosed throughprenatal or newborn screening, and those with symptom-based diagnosis.Methods: A total of 200 caregivers of 219 URDs children completed an on-line survey regarding the challengesand experiences...
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Young Shoots of White and Red Headed Cabbages Like Novel Sources of Glucosinolates as Well as Antioxidative Substances
PublikacjaMost literature data indicate that the diet rich in plant products reduces the risk of developing chronic non-communicable diseases and cancer. Brassica vegetables are almost exclusively synthesizing glucosinolates. Glucosinolates are higher in sprouts than in mature plants, being related to the activity of the specific myrosinase involved in the degradation of glucosinolates during developmental stages. This study compares the...
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Professional activity, gender and disease-related emotions: The impact on parents' experiences in caring for children with phenylketonuria
PublikacjaIntroduction: Clinical management of rare diseases often fails to acknowledge the challenges faced by caregivers.Whilst management of phenylketonuria (PKU) may not be considered as dire as other conditions, most studiesprimarily concentrate on clinical issues, dietary adherence, or the quality of life of the PKU patients, leavingcaregivers in the background. The aim of the study was to evaluate the psychosocial...