Information for families of children with undiagnosed conditions.
SWAN stands for ‘syndromes without a name’. It is not a diagnosis, but a term used when a child or young adult is believed to have a genetic condition and testing has failed to identify its genetic cause. Syndromes without a name are also referred to as undiagnosed genetic conditions, unknown genetic conditions or undiagnosed genetic disorders. We work with families of affected children and young adults aged 0-25, providing support and information in hospital, at home and in their local communities.
SWAN UK supports families affected by a syndrome without a name – a genetic condition so rare it often remains undiagnosed. We are the only dedicated support network for these families in the UK and are run by the charity Genetic Alliance UK.
Our aim is that every family gets the support they need, when they need it, regardless of whether they have a diagnosis or not. We work with UK based families of children and young adults up to 25 years old who are searching for a genetic diagnosis. Our network brings families together in a supportive community who understand the unique challenges of life without a diagnosis. We run fun events for the whole family, provide information through events and newsletters and have an extensive network of volunteer Parent Reps.
We educate professionals about the issues faced by families affected by a syndrome without a name and seek to help improve services so that all families can access high-quality coordinated care and appropriate testing or treatment. We also champion the rights and needs of the undiagnosed community through the policy work of Genetic Alliance UK, and through initiatives such as SWAN Europe and the Solve RD Community Engagement Task Force.
We offer 24/7 access to support and information via our members-only online communities, regular opportunities for parents to access face-to-face support as well as running regular whole family events.
Membership of SWAN UK is free for any family in the UK with a child or young adult (0-25) affected by a syndrome without a name.
SWAN UK is run by Genetic Alliance.
This is aimed at any family in the UK with a child or young adult (0-25) affected by a syndrome without a name.
This provider offers 24/7 access to support and information via our members-only online communities.
This can be accessed via the Undiagnosed website.
The Undiagnosed website can be accessed at any time.
This is free to access.
Email: info@undiagnosed.org.uk
Phone: 0300 124 0441
Visit the Genetic Alliance website.
Visit the Undiagnosed website.
Visit the Genetic Alliance Facebook page.
