SWAN UK (Syndromes Without A Name) is a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed conditions.
When Freddie was born we were a bit lost & it was very hard to get support. All the support groups were aimed at specific syndromes. I found SWAN on facebook in 2011 & it was finally a place where we belonged. Their were people who understood us & offered us advice. Without them i’m really not convinced i’d have managed to cope with everything as well as i have done. I’ve met some amazing mums who i speak to on a daily basis, who have some equally amazing children. It was being part of SWAN that made me begin my blog to help highlight undiagnosed children like Freddie.
Find out more by visiting
Or visiting their facebook page
They are also on twitter
Also you can find more swan bloggers on twitter