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How can I get a diagnosis for my child?
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Support & Information

  • What does SWAN or being undiagnosed mean?
  • How can I get a diagnosis for my child?
  • Why are some conditions difficult to diagnose?
  • Hear from families affected by SWAN
  • What support is available for my undiagnosed child?
  • How important is a diagnosis?

Latest from SWAN UK

We are recruiting: Engagement and Support Officer (Wales)/Rydym yn recriwtio Swyddog Ymgysylltu a Chymorth (Cymru)

News

We are recruiting: Engagement and Support Officer (Wales)/Rydym yn recriwtio Swyddog Ymgysylltu a Chymorth (Cymru)

Sabrina’s story

Family Story

Sabrina’s story

Bonkers

Family Story

Reaching new heights for SWAN UK

News

Tej and Suneta doing the three peaks challenge
Tweets by @SWAN_UK
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Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose. Our Big Ambition here at SWAN UK is that each of these families will have the support they need, when they need it.

You can help us achieve this ambition!

There is no science to fundraising – anyone can do it and there are endless ways of raising money. Why not drop us a line and we can have a chat about your ideas or suggest some ideas: [email protected].

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Information

  • What is a syndrome without a name?
  • Why is a diagnosis important?
  • How do I access genetic testing?
  • Undiagnosed – a documentary

Genetic Alliance UK provides the secretariat for the following parliamentary groups on Rare, Genetic and Undiagnosed Conditions:

  • The Westminster All-Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions
  • The Scottish Parliament Cross-Party Group on Rare, Genetic and Undiagnosed Conditions
  • The Welsh Assembly Cross-Party Group on Rare, Genetic and Undiagnosed Conditions

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© Genetic Alliance UK 2018

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.

 

Genetic Alliance UK registered charity numbers: 1114195 & SC039299.

 

Registered company number: 05772999