Some children affected by a syndrome without a name might be described as having global developmental delay or failure to thrive. They might have learning disabilities and/or additional physical needs. They can sometimes have complex medical needs and epilepsy. Some children may not have any learning disabilities but have physical difficulties whilst others are physically fine but have learning disabilities.
SWAN UK (syndromes without a name) is the only dedicated support network for families of children and young adults (0-25) with undiagnosed genetic conditions. It is run by the charity Genetic Alliance UK. SWAN UK enables families to: – Make contact with other families who understand the unique challenges of raising a child affected by an undiagnosed genetic condition, attend free, fun whole-family events and regional day trips and access 24/7 information and support through their online forums.