SWAN UK (syndromes without a name) is run by @GeneticAll_UK, offering support and information to families of children with undiagnosed genetic conditions.
FROM 23.03.26, THIS PAGE WILL NO LONGER BE UPDATED Stay up to date by following our other social media accounts Facebook @SWANchildrenUK Instagram @swanchildrenuk
We've created a new leaflet with Rareminds as a practical resource for those who have children with undiagnosed genetic conditions. Find out more and have a read here:
https://t.co/SttDuZjlok
📢What is a genetic condition? We are excited to launch the first of our three new animations: Please watch and share to help us reach more families.
https://t.co/XI9SqwS55J
We're holding a free workshop run by @contactfamilies exclusively for SWAN UK families on supporting parents of children with anxiety. Join us on 2 October 12-2pm. Register: https://t.co/U3mrv53MUK
If you are not yet part of the SWAN UK community join now: https://t.co/vg6pRE8JRM
'A rapid exome, metabolic array, skin biopsy, and a whole genome study have all failed to find the cause of Rosie's condition.' https://t.co/4yqwJBZrVP
We’re thrilled to announce that Nick Meade has been appointed as the Chief Executive of Genetic Alliance UK and will start his new role on 1 May 2025! Find out more on our website https://t.co/bpzbdknp1B
Today a chase the chicken fundraiser is taking place around Bristol!
'What is that?' I hear you say? Learn more and support the fundraiser now - and those nearby, don't forget to look out for the run taking place!
🐥👉 https://t.co/JlZ5hYyB3e
It's #UndiagnosedChildrensDay! 🥳 🤩
Having a child with an #undiagnosed#genetic condition is lonely and isolating, with families having more questions than answers about what the future holds. Please share this post to help more families find SWAN UK!
https://t.co/6S3FsUVze2
This is a SWAN UK community member enjoying a lovely day out at Thames Valley Adventure playground!
To find out more about the support we offer or join the SWAN UK community find out more on our website 👉 https://t.co/kNGDD6d2Lq
'Having a child with an undiagnosed genetic condition can feel very isolating and scary. However, Florence has brought us so much joy and more resilience than anyone I know. She has taught us so much in 3 years, and we couldn't be prouder'
Get involved 👉 https://t.co/Pdw5f5JubW
For years, until the DDD Study gave him a chromosomal abnormality diagnosis, Tom was a SWAN.
It's a tricky place to be - without a diagnosis, you have no prognosis.
'SWAN UK have supported our whole family for over 12 years. We’ve made some lovely friends and some gorgeous memories. You are never alone in the SWAN UK community'.
Every family deserves support. Help us reach more families this #UndiagnosedChildrensDay.
2 weeks to go until #UndiagnosedChildrensDay 2025!
Two weeks to tell the world about our incredible community and the work of SWAN UK. Please help us make Undiagnosed Children's Day the best yet by sharing our posts.
https://t.co/gUUno79IYY
Meet the Parkes family!
Last #UndiagnosedChildrensDay they shared their fight since Charlie was born, struggling to get support when you don't fit into the boxes that healthcare professionals look for.
You can still read their blog on our website now https://t.co/i8P4Fy6Jmh
@mrs_mango@GeneticAll_UK We're so glad to be able to offer support to your wonderful family. And right back at you - we are also very grateful for the support you have shown us over the years you've been part of our incredible community! 😊