SWAN UK

SWAN UK (Syndromes Without A Name) is a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions.

The support group Syndromes Without a Name (SWAN) was formed in 1999 by the grandmother of a child with severe developmental delays, but no diagnosis for her condition. Over the following decade SWAN provided support and information to numerous families and saw its membership rise to 1300 members. Close links were formed with a number of health and social care professionals in the UK and with similar support groups abroad.