Introducing Swan Ireland
Introducing SWAN Ireland
‘SWAN Ireland’ is a newly established support group for people, and parents, of children who present with 'syndromes without a name'. SWAN Ireland is a member of 'SWAN Europe' and 'The Wheel' and joins a host of international networks in a shared mission to provide a platform and community for families affected by syndromes without a name.
'SWAN' as a term used when a person is believed to have a genetic condition where genetic testing was unable to identify the cause. Some children with SWAN might be described as presenting with 'global developmental delay' or 'failure to thrive' (SWAN UK, 2017, available at https://www.undiagnosed.org.uk/support_information/what-does-swan-or-being-undiagnosed-mean/ ).
SWAN Ireland specifically aims to:
1. Foster a sense of belonging and build a community for families in Ireland affected by SWAN.
2. Provide a platform for families in Ireland to share experiences, information and support.
3. Raise awareness about SWAN among families, professionals and within the community.
4. Support the development of high quality information and health services for these families.
You can read more about SWAN Ireland's journey and meet some of their founding members at https://www.undiagnosed.org.uk/news-event/introducing-swan-ireland/
If you would like more information or wish to join their members’ mailing list for news of updates and events, please email firstname.lastname@example.org or direct message SWAN Ireland via their social media accounts.
Join SWAN Ireland on Facebook. You can request to join a 'SWAN Ireland' private group. There are 48 members so far. Click ‘add frame’ and search ‘SWAN Ireland’ to add a SWAN Ireland frame to your profile picture to raise awareness and show your support. Follow SWAN Ireland on twitter @IrelandSwan. Click here to add a Twibbon to your profile to show your support.