SWAN UK (Syndromes Without A Name) offers support and information to families of children with undiagnosed genetic conditions.
It is a project run by the charity Genetic Alliance UK.
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. Many have life-threatening epilepsy, or are reliant on oxygen, feeding tubes or other medical equipment. 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. Without a diagnosis, 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’s aims are to:
1. Develop a community of families of children with undiagnosed genetic conditions for mutual support and information sharing.
2. Develop a network of health and social care professionals with expertise in undiagnosed genetic conditions.
3. Increase awareness and understanding of undiagnosed genetic conditions.
SWAN UK currently supports over 700 families from across the UK, with more families joining every day.