Contact Details

Miriam Ingram

Contact Tel:
020 7831 0883
Mobile:
Contact Email:
info@undiagnosed.org.uk
Website:
https://www.undiagnosed.org.uk/
Facebook Page
Twitter Feed
LinkedIn Profile

Key Services

Areas covered

About


 

SWAN UK (syndromes without a name) is the only dedicated support network in the UK for families of children and young adults with undiagnosed genetic conditions. We are run by the charity Genetic Alliance UK.

Joining is free for any family in the UK with a child (0-25) affected by an undiagnosed genetic condition.

As a member of SWAN UK you can:

If you answer yes to any of the questions below then SWAN UK is here to support your family:

  1. Have you been told your child has global development delay or failure to thrive, but not been told the reason why?
  2. Does your child have medical, physical or learning difficulties which are currently unexplained?
  3. Is your child suspected to have a genetic condition but the doctors don’t know what it is?
  4. Has your child had genetic tests, for example microarrays, that have come back negative or of ‘unknown clinical significance’?
  5. Is your child taking part in, or are you hoping they will take part in, genetic research such as Deciphering Developmental Disorders (DDD) or the 100,000 Genomes Project?
  6. Is your child having their exome or genome sequenced, or have they had exome or genome sequencing and the cause of their condition is still unknown?

We have Parent Reps across the UK.

For general enquiries email: info@undiagnosed.org.uk

To join SWAN UK email: joinus@undiagnosed.org.uk

Address: Genetic Alliance UK, Level 3, Barclay House, 37 Queen Square, London, WC1N 3BH

Categories of SEND

Cognition and learning, Communication and Interaction, Sensory and/or physical development difficulties , Medical conditions , Emotional, social & mental health difficulties.

Age group

Early years, Primary, Secondary.

Type

Community & Voluntary Sector Service, Information, Guidance & Advocacy Service .

Referral Process

Parents of children affected by undiagnosed genetic conditions (syndromes without a name) can self refer by emailing joinus@undiagnosed.org.uk. They will then be sent a registration form to complete - membership is free. You can also join by visiting the website and completing a registration form.