A donation to SWAN UK (syndromes without a name) will increase our ability to provide support to families of children and young adults with undiagnosed genetic conditions in the UK.

SWAN UK is run by Genetic Alliance UK and is the only dedicated support network of its kind in the UK. It is estimated that around 6,000 children are born every year with a syndrome without a name. 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 want it recognised that being undiagnosed is not always a temporary stage; the genetic cause of some conditions may never be known. We want 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.

Your donation will allow us to:

• enable families to make contact with others who understand the unique challenges of raising a child affected by an undiagnosed genetic condition
• support families in hospital and at home offering 24/7 access to information and support
• run regular free events to bring families together and provide opportunities to make precious memories. These include stay and play sessions, coffee meet ups and regional day trips to theme parks such as Peppa Pig World and Flamingo Land
• support siblings to make new friends who understand how difficult having an undiagnosed brother or sister can be
• educate professionals about the issues faced by families affected by a syndrome without a name and help improve services so that all families receive high-quality coordinated care and appropriate testing or treatment