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$1,233 of $30,000 target.
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Beck Donoghue Vines
HCU Network Australia
$30,936 of $30,000 target
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HCU (Homocystinuria) Network Australia Inc.
HCU Network Australia is a Health Promotion Charity established in 2014, with the vision “to be a driving force in the journey to a cure, improving quality of life along the way”. Our aim is to achieve meaningful progress and best health outcomes for the HCU community. Our priorities are to: [list] [*]Connect and support people impacted by homocystinuria; [*]Improve the diagnosis path to enable appropriate treatment; [*]Provide education and informatoin to people impacted by homocystinuria; [*]Encourage and support clinical research, research for novel therapies and ultimately a cure; and [*]Raise funds to achieve our objectives. [/list] Homocystinuria (HCU) is a devastating rare genetic disease that when untreated causes most notably intellectual disability and early mortality. Approximately 25 per cent of untreated affected individuals do not live past their 20s with others experiencing reduced quality of life. HCU is progressive and affected individuals suffer multi-systemic disorder of the central nervous system (CNS), ocular, skeletal, and cardiovascular system. Symptoms are highly variable but include intellectual disability, developmental delay and learning difficulties, psychiatric disturbances, behavioural problems, dislocation of the lens of the eye resulting in blindness if untreated, seizures, osteoporosis and skeletal abnormalities, premature heart attack and stroke. As a whole, the complications of the disease lead to a reduced quality of life and shorter life expectancy. No cure has been discovered for HCU. Those affected require life-long medical and dietary management.read more
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