Services for children and young people in Northamptonshire (aged 0-25) with special educational needs and disabilities.

Syndromes without a Name (SWAN) UK

Type of service:
Forums And Support Networks
c/o Genetic Alliance UK, Level 3, Barclay House, 37 Queen Square, Camden, London WC1N 3BH
Telephone number:
0207 831 0883
Email address:
Service description:
SWAN UK is the only support network in the UK offering support and information to families of children and young adults with undiagnosed genetic conditions (also known as syndromes without a name). SWAN UK is run by the charity Genetic Alliance UK. SWAN UK have 3 aims:

• Develop and support a community of families of children affected by undiagnosed genetic conditions.

• Support the development of high quality information and services for families of children affected by undiagnosed genetic conditions.

• Raise public and professional awareness of undiagnosed genetic conditions and the unique challenges faced by affected families.

Northampton Local Parent Rep: Claire Walton (email '')

To join, send a registration form to ''
Age range:
0 - 99 years
Eligibility criteria:
  • Open to everyone
Referral route:
  • Contact service direct
  • No referral needed
Last updated on:

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