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. Your local Parent Rep is Claire Walton (email

Registered charity no. 1114195.

Useful extra websites


RareConnect is a free online platform with disease specific communities and general discussion groups that can link people with rare conditions who may live hundreds of miles apart.

Rare Connect website

Make sure you know all the names that people use for a condition. You can do this by going to orphanet website and searching for a condition.

Age range:
0 - 99 years
Eligibility criteria:
  • Open to everyone
Referral route:
  • Contact service direct
  • No referral needed
Last updated on: