SWAN UK

Description:

SWAN UK is the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK.  It is run by the charity Genetic Alliance UK.

SWAN stands for ‘syndromes without a name’, which is a term used when a child or young adult is believed to have a genetic condition but 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.

Children affected by a syndrome without a name might be affected by learning difficulties and / or physical disabilities. They can sometimes have complex medical needs and may have epilepsy.  Children affected by a syndrome without a name can have a range of different symptoms and each child is likely to be affected differently.

For more information, please follow the link to visit their website.