SWAN UK (Syndromes Without A Name) offers support and information to families of children with undiagnosed genetic conditions. It is an initiative of the charity Genetic Alliance UK.
SWAN UK (Syndromes Without A Name) offers support and information to families of children with undiagnosed genetic conditions.
As many as 50% of children having genetic tests through the NHS may not get a definite diagnosis for their condition. Most have physical and/or learning disabilities, as well as severe and complex medical needs. Without a diagnosis, their families have no idea what the future will hold for their child – whether they will walk, talk, or even how long they are likely to live. Families often experience extreme difficulty accessing the information, care and services that their children need. They may also feel immensely isolated and alone, even within the wider disabled children's community.
SWAN UK actively brings families together through our online community and through face-to-face meet-ups across the UK. We provide practical advice, signposting families to relevant genetic research studies and other services. We work with health, social care and education professionals to highlight the issues faced by undiagnosed families.
SWAN UK is the only dedicated support in the UK for families of children with undiagnosed genetic conditions. Since launching in May 2011, over 1,500 families have contacted us.
SWAN UK aims to:
- To develop and support a community of families of children affected by undiagnosed genetic conditions.
- To support the development of high quality information and services for families of children affected by undiagnosed genetic conditions.
- To raise public and professional awareness of undiagnosed genetic conditions and the unique challenges faced by affected families.
Established: May 2011
Registered Charity Number: 1114195
Board members: 10
Full time staff: 9
Part time staff: 6
Phone number: 020 7704 3141
Address: Unit 4D, Leroy House436 Essex RoadLondon N1 3QPView charity accounts on the Charity Commission website
SWAN UK (syndromes without a name) 2016SWAN UK is the only dedicated support in the UK for families of children with undiagnosed ... More