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Syndromes Without A Name (SWAN UK)

SWAN UK (Syndromes Without A Name) is a project run by Genetic Alliance UK specifically for families of children with special needs who do not have a specific diagnosis. Offering information and support to families, the project offers a friendly listening ear whilst also seeking to raise awareness of what life is like with an undiagnosed genetic condition.

If you or someone you know is raising a child with an undiagnosed condition please encourage them to get in touch to see how the project can support them.

SWAN UK has 3 specified project aims:

  • develop a community of families with undiagnosed genetic conditions for mutual support and information sharing;
  • develop a network of health and social care professionals with expertise in undiagnosed conditions; and
  • increase awareness and understanding of undiagnosed genetic conditions.

Visit the website for details.

Who to contact


Where to go

Unit 4d, Leroy House
436 Essex Road
N1 3QP
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