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Resources such as registries and biobanks have become increasingly valuable for the research of rare conditions, by building up a sample size from a wide range of locations, different age groups and so forth. Several charities and academic organisations are directing efforts towards the implementation of such resources.
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SRUK understands the vital role that a support network can play in a person’s medical journey, whether that comprises of family members, friends or the medical team, and regardless of the diagnosis. To facilitate the provision of support networks, SRUK has 8 support groups in the UK; the leaders were recently approached for training offered by the Scleroderma Patient-centred Intervention Network.
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Read all about our two annual awareness campaigns in 2019. February's Raynaud's Awareness Month was a massive success, and we need your help to help us make as big a splash in June!
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