SWAN UK (Syndromes Without A Name) is a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed 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.
SWAN’s aims are:
1. Develop a community of families with undiagnosed genetic conditions for mutual support and information sharing.
2. Develop a network of health and social care professionals with expertise in undiagnosed conditions.
3. Increase awareness and understanding of undiagnosed genetic conditions.
In May 2011 support for families of children with undiagnosed genetic conditions was re-established by the new support project known as SWAN UK.
The work of SWAN UK is overseen by an Advisory Committee with expertise in undiagnosed genetic conditions.