SWAN UK (syndromes without a name) is the only dedicated support network in the UK for families of children and young adults with undiagnosed genetic conditions. We are run by the charity Genetic Alliance UK.
Joining is free for any family in the UK with a child (0-25) affected by an undiagnosed genetic condition.
As a member of SWAN UK you can:
If you answer yes to any of the questions below then SWAN UK is here to support your family:
We have Parent Reps across the UK.
For general enquiries email: firstname.lastname@example.org
To join SWAN UK email: email@example.com
Address: Genetic Alliance UK, Level 3, Barclay House, 37 Queen Square, London, WC1N 3BH
Cognition and learning, Communication and Interaction, Sensory and/or physical development difficulties , Medical conditions , Emotional, social & mental health difficulties.
Early years, Primary, Secondary.
Community & Voluntary Sector Service, Information, Guidance & Advocacy Service .
Parents of children affected by undiagnosed genetic conditions (syndromes without a name) can self refer by emailing firstname.lastname@example.org. They will then be sent a registration form to complete - membership is free. You can also join by visiting the website and completing a registration form.