Project: SWAN UK (Syndromes Without A Name)
Support and Information for Families of Children with Undiagnosed Genetic Conditions
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SWAN UK is a project run by Genetic Alliance UK offering support and information to parents of children with undiagnosed genetic conditions. Funded by the National Lottery through the Big Lottery Fund the project has 3 aims:
- Develop a community of families with undiagnosed genetic conditions for mutual support and information sharing
- Develop a network of health and social care professionals with expertise in undiagnosed conditons
- Increase awareness and understanding of undiagnosed genetic conditions.
How to join the SWAN UK community
To find out more about SWAN UK or to become a member please print off and return the SWAN UK registation formon 0207 704 3141 or via
You can download our leaflet for parents here.
Fundraising for SWAN UK
If you are interested in finding out how you can help us support families of children with undiagnosed genetic conditions please check out our fundraising pack or contact
The history of SWAN UK
SWAN UK builds upon the support previously offered to families by the charity Syndromes Without a Name (SWAN). Formed in 1999 by the grandmother of a child with severe developmental delays, but no diagnosis for her condition Syndromes Without A Name (SWAN) supported families for over a decade. 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 was not operating for 2 years from 2009.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). 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, advice and to raise awareness.
The SWAN UK project coordinator started in post in May 2011 and since then the project has developed good links with professionals working in the genetics community and the wider disabled children's sector. The are currently over 160 families known to the project with on average another 2 or 3 contacting the project each day.
The project has successfully used online social media such as Facebook, Twitter and YouTube to develop a virtual support network among families who are becoming increasingly involved in directing the project. Families are also kept up to date through our quaterly newsletter, read the second edition here.
If you are the parent of an undiagnosed child you might also find our leaflet Living Without A Diagnosis useful.
SWAN UK have also produced leaflets for families to share with medical professionals:
- Our leaflet for parents to take to their GP explaining the recent developments in genetic testing to help them request a referral to a Regional Genetics Centre which is available here.
- Our leaflet to let medical professionals about the support SWAN UK can offer families is available here.