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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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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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Environment Changes Genetic Effects on Respiratory Conditions and Allergic PhenotypesGenotype-phenotype associations relating to bronchitis and allergy susceptibility are dependent on the environment
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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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Psychosocial characteristics and predictors of health-care use in families of young children with cystic fibrosis in Western AustraliaThis study aimed to identify psychosocial predictors in cystic fibrosis that may inform intervention strategies.
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Decolonising Australian Psychology: Discourses, Strategies, and PracticeThis paper discusses the role of psychology in Australia and the negative impact that certain disciplinary theories and practices have had on Aboriginal and...
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The Human Phenotype Ontology: Semantic Unification of Common and Rare Disease.The Human Phenotype Ontology (HPO) is widely used in the rare disease community for differential diagnostics, phenotype-driven analysis...
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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.