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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. It is estimated that around 6,000 disabled children are born every year with a genetic condition likely to remain undiagnosed. Without a diagnosis families have no idea what the future will hold for their child. Will they walk? Will they talk? How long are they likely to live? Families struggle to have their needs taken seriously and access the services and support that they vitally need. Many feel extremely isolated and alone. SWAN UK supports families in hospital and at home offering 24/7 access to support and information. We run regular events to bring families together and provide opportunities to make precious memories. We support siblings to make new friends who understand how difficult having an undiagnosed brother or sister can be. We educate professionals about the issues faced by families affected by a syndrome without a name to help families receive high-quality coordinated care and appropriate testing or treatment. Our 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. We know there are so many families out there who still need our support, which is why we are aiming to double our membership and help families feel less isolated and alone.

Children with Cancer UK is the leading national children's charity dedicated to the fight against all childhood cancers. Around 4,500 children and young people are diagnosed with cancer every year in the UK. Our aims are to determine the causes, find cures and provide care for children with cancer. Our small team is united by a common goal – to save and improve young lives. We fund research into the causes and treatment of childhood cancers. We have accelerated breakthroughs to improve childhood cancer survival rates and find more effective treatments with fewer toxic side effects. Since 1988, Children with Cancer UK has raised over £250 million to support research into the causes and treatment of childhood cancers. We are now funding a total of 69 research projects, worth over £25 million at centres of excellence around the UK.