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- W2024077002 abstract "This editorial discusses the development of a patient group for Alström Syndrome, a multi-system life-limiting ultra-rare disease. Kay Parkinson founded the charity following the delayed diagnosis of both of her children with the Alström Syndrome. The piece demonstrates the great expertise held by patient groups and is relevant to other patient organisations in search of medical support, funding sources and clinical options. It is a source of information and inspiration for other groups looking to collaborate to create a centre of excellence." @default.
- W2024077002 created "2016-06-24" @default.
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- W2024077002 date "2014-10-28" @default.
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- W2024077002 title "Working with the NHS to develop the Alström multi-disciplinary clinic service" @default.
- W2024077002 doi "https://doi.org/10.1517/21678707.2014.969709" @default.
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