SWAN UK is a support network run by the charity Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions. SWAN UK membership is available to all UK-based families of children and young adults with an undiagnosed genetic condition. Registered charity no. 1114195.
You may also find the following websites useful:RareConnectRareConnect is a free online platform with disease-specific communities and general discussion groups that can link people with rare conditions.
Orphanet
Learn all the different names that might be used for a particular rare condition. Visit.