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SWAN UK (syndromes without a name) is the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK. It is run by the charity Genetic Alliance UK.
“We were established in 2011 thanks to a five-year grant from the Big Lottery Fund. We received further funding from the Big Lottery Fund with a three year grant in 2016. Our activities are also supported by the House of Fraser Annual Charity Event, Thomas Cook Children’s Charity and Goodstuff.”
It is estimated that around 6,000 disabled children are born every year with an undiagnosed genetic condition. Their big ambition is that all families who have a child affected by a syndrome without a name get the support they need, when they need it. They want it recognized that being ‘undiagnosed’ is not always a temporary stage; the genetic cause of some conditions may never be known. Their goal is to have every child and young adult with a syndrome without a name, to receive high-quality coordinated care and support both in hospital and at home.