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Rare disease education in Europe and beyond: time to actPeople 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.
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Wongi mi bardup (doing it our way): Methodologies promoting Aboriginal knowledges and cultural practices for Birthing on Noongar BoodjarThis paper sets out the methodological and theoretical considerations which framed how the Birthing on Noongar Boodjar project was conducted
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Assessing Diversity in Early Childhood Development in the East Asia-PacificIn all six countries, child development scores increased with age and urban children consistently performed better than rural children
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The Deep Genome Project.The Deep Genome Project—to deliver the functional biological annotation of all human orthologous genomic elements in mice
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Culturally competent communication in Indigenous disability assessment: a qualitative studyIndigenous people tend to exhibit a higher burden of disability than their non-Indigenous counterparts, and are often underserved by disability services. Engaging appropriately with Indigenous communities, families and individuals in the initial stages of disability assessment and planning is crucial in order to build trust and understanding of disability service models and ensure that Indigenous people receive support that is tailored to their needs and cultural realities. This article aims to identify key elements of culturally competent communication in Indigenous disability assessment and planning, and provide recommendations for strengthening capacity in this area.
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Evaluation of protocol amendments to the Environmental Determinants of Islet Autoimmunity (ENDIA) study during the COVID-19 pandemicLiz Davis MBBS FRACP PhD Co-director of Children’s Diabetes Centre Co-director of Children’s Diabetes Centre Professor Davis is a paediatric
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A psychometric examination of a modified eight-item version of the children's eating disorder examinationFurthermore, previous studies suggest that scores obtained from a simplified 8-item version of the ChEDE may be more reliable and useful for research...
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Multi-modality monitoring of cystic fibrosis lung disease: the role of chest computed tomographyStratification of monitoring protocols based on the risk profile of the patient can help us in the future to better care for people with Cystic Fibrosis.
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The impact of expanding access to early childhood education services in rural Indonesia.This article examines the relationship between preschool quality and children’s early development in a sample of over 7900 children enrolled in 578 preschools in rural Indonesia.
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The gap in life expectancy from preventable physical illness in psychiatric patients in Western AustraliaDespite knowledge about excess mortality in people with mental illness, the gap in their life expectancy compared with the general population has widened...