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Parental Experiences of Having a Child Diagnosed With Septo-Optic DysplasiaSepto-optic dysplasia (SOD) is a congenital disorder affecting 1 in 10,000 births, defined by the presence of at least two of a clinical triad, consisting of optic nerve hypoplasia, midline brain defects and pituitary hormone deficiency. Children with SOD may have vision impairment, hormonal deficiencies, developmental disorders, or epilepsy, but the clinical picture is highly variable. The complexity of SOD, its interplay with family factors, and the need for multiple specialty commitments can make the diagnosis period a challenging time for families.
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Driving change for children with disabilityToday marks International Day of People with Disability (IDPwD), a United Nations initiative that encourages communities around the world to deepen their awareness, understanding and acceptance of people with disability.
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MRCF launches Perth-based biotech developing new treatment for Cystic FibrosisA The Kids Research Institute Australia spin-off company has received $20 million from the Medical Research Commercialisation Fund to develop a promising new therapy for the treatment of Cystic Fibrosis.
Research
Can Respiratory Hospital Admissions in Children with Cerebral Palsy Be Reduced? A Feasibility Randomized Controlled Trial (RESP-ACT)To investigate the feasibility of implementing recommendations of the consensus statement for the Prevention and Management of Respiratory Disease in children with severe cerebral palsy (CP) via RESPiratory hospital Admissions in children with cerebral palsy: a feasibility randomized Controlled Trial (RESP-ACT).
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My child is wheezing – what should I do?Almost 50 per cent of preschool children will experience at least one episode of wheeze, a whistling sound produced by the airways during breathing.
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Cystic FibrosisCystic fibrosis (CF) is the most common chronic, life-shortening genetic condition affecting young Australians. There is no cure but researchers are working to prevent the onset of lung disease.
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Embrace Big Idea 2023 WinnerCongratulations to our Rio Tinto Children's Diabetes Centre mental health and wellbeing team who, in partnership with the Embrace childhood trauma
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Community Involvement critical to researchUnderstanding the experiences of those living with a chronic condition such as type 1 diabetes (T1D) has been the topic of conversation throughout the medical research community over the last decade or so.
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Researcher Spotlight K-Lynn SmithK-Lynn Smith is a Research Fellow at the Australian Institute of Health Innovation and Partnership Centre for Health Systems Sustainability at Macquarie University NSW.