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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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The psychosocial impact of childhood dementia on children and their parents: a systematic reviewChildhood dementias are a group of rare and ultra-rare paediatric conditions clinically characterised by enduring global decline in central nervous system function, associated with a progressive loss of developmentally acquired skills, quality of life and shortened life expectancy. Traditional research, service development and advocacy efforts have been fragmented due to a focus on individual disorders, or groups classified by specific mechanisms or molecular pathogenesis.
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Strategies for coping and dealing with lateral violence among Aboriginal people living in south-east AustraliaLateral violence, a group of behaviours directed towards people of the same group, is considered endemic among Aboriginal people. Behaviours include bullying, gossiping, isolation or exclusion of certain group members, and challenges to one’s Aboriginal identity. Lateral violence impacts all aspects of one’s life. Due to its pervasiveness, this qualitative study investigated strategies employed by Aboriginal people to deal with lateral violence.
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WALLABY Pilot Survey: H i gas kinematics of galaxy pairs in cluster environmentWe examine the H i gas kinematics of galaxy pairs in two clusters and a group using Australian Square Kilometre Array Pathfinder (ASKAP) WALLABY pilot survey observations. We compare the H i properties of galaxy pair candidates in the Hydra I and Norma clusters, and the NGC 4636 group, with those of non-paired control galaxies selected in the same fields.
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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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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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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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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...