Syndromes Without a Name (SWAN) UK

Type of service:
Forums And Support Networks
CAN Mezzanine, 49-51 East Road, Hackney, London N1 6AH
Telephone number:
0207 831 0883
Email address:
Service description:

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.


Learn all the different names that might be used for a particular rare condition. Visit.

Age range:
0 - 25 years
Eligibility criteria:
  • Open to everyone
Referral route:
  • Contact service direct
  • No referral needed
Last updated on: