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.
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.
In a recent survey our members told us:
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.
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 firstname.lastname@example.org or print and post it to:
Genetic Alliance UK
Unit 4D Leroy House
436 Essex Road
Alternatively you can email email@example.com to request a registration form in the post.