Joining SWAN UK

Raising a child affected by a syndrome without a name can be a very isolating experience. By joining SWAN UK you will be able to make contact with other families who understand just how worrying and frustrating it can be. 

‘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 Swans have varying needs and difficulties.’  
SWAN UK Member

Membership is free for any family affected by a syndrome without a name living in the UK.

Click the ‘Join us’ button below to download a registration form. 

Joining SWAN UK

Why Join Us?

24/7 Support & Information

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 free fun events for all the family, like our growing number of local stay and play sessions or regional day trips to theme parks such as Peppa Pig World and Flamingoland
  • 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

We'll also send your child balloons when they are in hospital to cheer them up.

24/7 Support & Information
Community

Community

In a 2016 member survey:

  • 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) affected by a syndrome without a name.  All you need to do is complete and return our registration form which you can download by clicking the ‘Join us’ button below. 

You can email it back to joinus@undiagnosed.org.uk or print and post it to:

Genetic Alliance UK
SWAN UK
Level 3 Barclay House
37 Queen Square
London WC1N 3BH

Alternatively you can email joinus@undiagnosed.org.uk to request a registration form in the post.

How to join us

Join our community of families

Join us