Syndromes Without a Name (SWAN) UK Charity

SWAN UK is the UK's only dedicated support network for families affected by undiagnosed genetic conditions, often called syndromes without a name (SWAN).

Their mission is to ensure every family receives the support they need, regardless of diagnosis status. Their efforts include:

  • Building and nurturing a supportive community for families of children with undiagnosed genetic conditions
  • Providing high-quality information and services to ensure families have access to the best support
  • Increasing public and professional awareness of syndromes without a name and the challenges families face

Membership in the SWAN UK community is free. Visit their website to learn more and register as a member

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