Charity: SWAN UK (syndromes without a name)
SWAN UK (syndromes without a name) is the only UK-wide network that provides information and support to families with children and young adults affected by undiagnosed genetic conditions. Run by the charity Genetic Alliance UK, our big ambition is that every family affected by a syndrome without a name has the support they need, when they need it, regardless of whether they have a diagnosis or not. We provide the opportunity for families to connect with others who understand the unique challenges of raising a child with an undiagnosed genetic condition through online forums and free whole-family events. We produce tailored information and help support families so that they feel less isolated and alone.