Provide opportunities to meet other families
‘Before SWAN UK we never really belonged anywhere. I’d assumed a diagnosis was available for every child but now I know better. However what I found in SWAN UK was an amazing community who totally understood how difficult life could be without one!’
Our private, members-only online forums allow parents to talk to others who know what it’s like to have a child with an undiagnosed genetic condition. There is usually someone online 24 hours a day, seven days a week. SWAN UK members can use these groups as a platform to ask questions, look for advice, or just chat to someone else who ‘gets it’.
If Facebook groups aren’t for you, we also run virtual coffee meets where we pair members up so they can get together for a virtual chat. You can find out more about virtual coffee meets and how you can take part here.
Run fun, inclusive events
We run whole-family events so that families can get together and meet others who know what it’s like to have a family member with an undiagnosed genetic condition. These have previously included trips to Flamingo Land, Peppa Pig World, Longleat and Edinburgh Zoo. We also ran smaller regular local events across the country.
We are currently running monthly virtual discos and regular sing and sign events.
‘SWAN UK has helped us feel we belong somewhere, that we aren’t alone, that there are other families who simply understand what it’s like living with the unknown.’
Provide information and raise awareness
We educate professionals about the issues faced by families affected by a syndrome without a name by providing talks and training.
We also work closely with NHS clinical genetic departments and the genomic research community so families can access high quality information and access to testing.
Our regular information events help parents and front line professionals understand why some conditions are so hard to diagnose and hear first hand accounts of the impact they can have on family life.