SWAN UK: Syndromes Without A Name
SWAN UK is an initiative run by the charity Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions.
SWAN UK has three aims:
Develop and support a community of families of children affected by undiagnosed genetic conditions.
Support the development of high quality information and services for families of children affected by undiagnosed genetic conditions.
Raise public and professional awareness of undiagnosed genetic conditions and the unique challenges faced by affected families.
For many families, having no diagnosis or prognosis for their child can be challenging and often isolating.
We are working closely with the families that we support and have developed five themes we will focus on when developing services to meet their needs:
Advocacy and Practical Support
Research and Policy