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Published. 9 January 2021. Rare Disease Framework sets out vision to improve the lives of more than 3.5 million people with rare diseases in the UK. The framework will speed up diagnosis, increase ...

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Patients with EDS often have skin that can be describes as “velvety”, “loose”. This skin characteristic predisposes patients to problems with wound healing. Patients will often note that they develop “paper-thin” scars. Patients also have excessively flexible, loose joints. These ‘hypermobile’ joints can be easily and frequently ...Lymphatic malformations are rare, non-malignant masses consisting of fluid-filled channels or spaces thought to be caused by the abnormal development of the lymphatic system. These malformations are usually apparent at birth or by two years of age. Lymphatic malformations can affect any area of the body (except the brain), but most …

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