Coordinator for SWAN UK
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 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 from the Jeans for Genes Appeal to ask families affected by undiagnosed conditions to identify their priorities for the future work of the charity Syndromes Without a Name (SWAN). 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 charities.
The main aims for the required support service were identified as:
- Providing social support for undiagnosed families
- Providing practical information and advice
- Awareness raising
I do this through a variety of channels to make sure that parents of children without undiagnosed conditions have best support available. You can view our blog which parents contribute to here and you can view our website www.undiagnosed.org.uk for more information.
Alternatively, you can contact me at or .