SWAN UK (syndromes without a name) is run by @GeneticAll_UK, offering support and information to families of children with undiagnosed genetic conditions.
UK
Joined May 2011
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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:
geneticalliance.org.uk/news/…
How are genetic conditions diagnosed? Watch our new animation to find out: youtu.be/78XZ-F-ovT0?si=TjbL…
#undiagnosed #UndiagnosedGeneticCondition #SyndromeWithoutAName #genetic #GeneticCondition #diagnosis
📢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.
youtu.be/ZxT61DM90DU?si=M_da…
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: eventbrite.com/e/support-for…
If you are not yet part of the SWAN UK community join now: docs.google.com/forms/d/e/1F…
'A rapid exome, metabolic array, skin biopsy, and a whole genome study have all failed to find the cause of Rosie's condition.' geneticalliance.org.uk/news/…
It was a brilliant day @GreatOrmondSt celebrating Undiagnosed Children's Day on Friday! Thank you so much for helping to spread the word! @GOSHCharity @RoaldDahlFund @annajewitt1 #UndiagnosedChildrensDay #UCD2025
We are delighted to share that @GeneticAll_UK, the charity that runs SWAN UK, has appointed Nick Meade as its new CEO 👇
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 tinyurl.com/5cwvzmzx
SWAN UK (syndromes without a name) retweeted
Happy #undiagnosedchildrensday
We really enjoyed being in the lagoon @GOSHCharity with @RoaldDahlFund (Mel), @SWAN_UK (Marie) & @spreadasmileuk ( Collette & Kerry) helping raise awareness of SWAN patients and their families. It was a fun filled Friday @thednadoc
Take a sneak peak at this clip from one of our new animations ... launching soon! #UCD2025 #UndiagnosedChildrensDay #SyndromeWithoutAName
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!
🐥👉 ow.ly/RU0M50VFx9i
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!
ow.ly/kuGJ50VHzPz
ALT It's Undiagnosed Children's Day image with illustrations of children all wearing pink
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 👉 ow.ly/Ejib50VFiXk
ALT A young man on a chair swing at Thames Valley Adventure playground
ALT Thames Valley Adventure playground through a fence
'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 👉 ow.ly/oSnL50VFiy0
SWAN UK (syndromes without a name) retweeted
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.
There is only 1 week to go until #UndiagnosedChildrensDay!
Who is ready?
👉 ow.ly/cw4X50Vy3k5
ALT 1 week until Undiagnosed Children's Day
'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.
ALT family of 3 kids say smiling in the sun with ice creams
There is only 1 week to go until #UndiagnosedChildrensDay!
Who is ready?
👉 ow.ly/cw4X50Vy3k5
ALT 1 week until Undiagnosed Children's Day
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.
ow.ly/C55950Vy1Ne
ALT 2 weeks until Undiagnosed Children's Day 2025, ran by SWAN UK
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 ow.ly/P1Zv50Vy22U
ALT Two images side by side of Charlie
SWAN UK (syndromes without a name) retweeted
We are so grateful for the support and friendship of @SWAN_UK @GeneticAll_UK over the past 12yrs #thankyou 💕
Undiagnosed Children's Day Fri 25 April 💕
#swanuk #undiagnosedchildrensday #ucd2025 #undiagnosed #community #support #syndromeswithoutaname
instagram.com/p/DIMHFIVS7KS/…
