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 to any family affected by syndrome without a name living in the UK.

Joining SWAN UK

Why Join us?

24/7 Support & Information

As a member of the SWAN UK community you will be able to access 24/7 information and support from our members-only online forums, make contact with other families affected by a syndrome without a name living near you or whose children have similar difficulties to yours, and attend our numerous family events and day trips.

24/7 Support & Information


In a recent survey our members told us:

  • 93% said they feel less isolated since joining SWAN UK
  • 77% feel that their family is better supported since joining SWAN UK
  • 89% feel better informed since joining SWAN UK
  • 87% say they have a bigger support network 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 (LINK) 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 to any parent of a child or young adult affected by a syndrome without a name living in the UK. 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 or print and post it to:

Genetic Alliance UK
Unit 4D Leroy House
436 Essex Road
N1 3QP

Alternatively you can email to request a registration form in the post.

How to join us

Join our community of families

Join us