Why Join Us?

As a member of SWAN UK you can:

  • Make contact with other families who understand the unique challenges of raising a child affected by an undiagnosed genetic condition.
  • Attend fun events for all the family – currently we are running regular virtual discos and hope to start face to face events again soon.
  • Access 24/7 information and support from our online forums.
  • Get opportunities to help raise awareness by speaking at events, sharing your story or even coming to Westminster with us to talk to MPs about the issues affecting your family.
  • Develop your own personal and professional skills by volunteering as a SWAN UK Parent Rep.

‘Without a diagnosis there was no place for me in groups/organisations for diagnosed conditions and syndromes. It is important for me to have somewhere where we are all ‘in the same boat’ even though our children have varying needs and difficulties.’  SWAN UK Member

Membership is free for any family living in the UK searching for a genetic diagnosis.


In our last survey our members told us:

  • 93% said they feel less isolated since joining SWAN UK
  • 89% feel better informed since joining SWAN UK
  • 87% say they have a bigger support network since joining SWAN UK
  • 77% feel that their family is better supported since joining SWAN UK                                                                      

If you’re unsure whether you want to join, why not get in touch with one of our SWAN UK Parent Reps to find out more? Even if you don’t live in their area they’d be happy to have a chat.

How To Join Us

Membership of SWAN UK is free for any family in the UK with a child or young adult (0-25) who are searching for a genetic diagnosis. 

All you need to do is click the ‘Join us’ button below to register online.

If you have any difficulty completing the online form please email [email protected] or call us on 0300 124 0441.

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