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.
In 2009 the group’s founder was advised to give up her role co-ordinating SWAN because of health problems. As most SWAN members were parents of children with severe disabilities, there was no-one able to take over. With minimal resources the group faced closure and has not been operating for the last 2 years.
Early in 2010 Genetic Alliance UK secured funding to ask families affected by undiagnosed conditions to identify their priorities for the future work of the charity Syndromes Without a Name (SWAN). 149 surveys were completed and 15 interviews conducted with parents, medical professionals and staff members of other voluntary organizations.
Key findings were that undiagnosed families experience difficulties accessing help and support from various services including, health, educational and social services. Many parents reported feelings of isolation, frustration and disappointment. A general lack of empathy and understanding was felt by the majority of participants. The creation of a specific supportive service was endorsed not only by families of undiagnosed children but also by professionals and staff members of other voluntary organizations.
In 2011 Genetic Alliance UK secured funding from the Big Lottery Fund to employ a full time coordinator for 5 years to re-establish the SWAN support group. Based on the needs identified during the consultation, 3 aims were specified:
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.