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.
As a member of SWAN UK you can:
We'll also send your child balloons when they are in hospital to cheer them up.
In a 2016 member survey:
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.
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 firstname.lastname@example.org or print and post it to:
Genetic Alliance UK
Level 3 Barclay House
37 Queen Square
London WC1N 3BH
Alternatively you can email email@example.com to request a registration form in the post.