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SWAN (syndromes without a name)

Address:
SWAN UK,
Level 3, Barclay House,
37 Queen Square,
London,
WC1N 3BH
E-mail: london@undiagnosed.org.uk
Telephone: 020 7831 0883
Website: http://www.undiagnosed.org.uk/

Description

Who we are:

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.

SWAN is run by the charity Genetic Alliance UK.

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

Is it common to have a syndrome without a name?

It is thought that about half (50%) of children with learning disabilities and approximately 60% of children with disabilities which are apparent from birth do not have a definitive diagnosis to explain the cause of their difficulties.

  • Approximately 6,000 children are born in the UK each year with a genetic condition likely to remain undiagnosed.
  • Currently around 50% of children undergoing genetic testing in the UK won’t get a confirmed diagnosis.

The three main reasons why a child’s genetic condition remains undiagnosed:

  • It is very rare or a condition that hasn’t been seen before so there is no test
  • It is an unusual presentation of a known condition and a child’s symptoms might be different to those with the same condition so not tested for because it is not recognised as that condition.
  • Some genetic testing finds genetic changes of ‘unknown clinical significance’

What we do:

SWAN UK membership offers:

  • A mechanism to make contact with other families who understand the unique challenges of raising a child affected by an undiagnosed genetic condition
  • Attend free, fun whole-family events
  • Access 24/7 information and support through online forums
  • Monthly and quarterly newsletters

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

  • Have you been told your child has global development delay or failure to thrive, but not been told the reason why?
  • Does your child have medical, physical or learning difficulties which are currently unexplained?
  • Is your child suspected to have a genetic condition but the doctors don’t know what it is?
  • Has your child had genetic tests, for example microarrays, that have come back negative or or of ‘unknown clinical significance’?
  • 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?
  • 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?

Find out more:

Record Last Updated on: 04/04/2018

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