SWAN UK (syndromes without a name)

SWAN UK (syndromes without a name) is run by @GeneticAll_UK, offering support and information to families of children with undiagnosed genetic conditions.

[SWAN UK (syndromes without a name) @SWAN_UK]

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

[SWAN UK (syndromes without a name) @SWAN_UK]

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

[SWAN UK (syndromes without a name) @SWAN_UK]

How are genetic conditions diagnosed? Watch our new animation to find out: https://t.co/Wn3y6Cd6JH

#undiagnosed #UndiagnosedGeneticCondition #SyndromeWithoutAName #genetic #GeneticCondition #diagnosis

[SWAN UK (syndromes without a name) @SWAN_UK]

📢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

[SWAN UK (syndromes without a name) @SWAN_UK]

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

[SWAN UK (syndromes without a name) @SWAN_UK]

'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

[SWAN UK (syndromes without a name) @SWAN_UK]

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

[SWAN UK (syndromes without a name) @SWAN_UK]

We are delighted to share that @GeneticAll_UK, the charity that runs SWAN UK, has appointed Nick Meade as its new CEO 👇

[Genetic Alliance UK @GeneticAll_UK]

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

[Anna Jewitt @annajewitt1]

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

[SWAN UK (syndromes without a name) @SWAN_UK]

Take a sneak peak at this clip from one of our new animations ... launching soon! #UCD2025 #UndiagnosedChildrensDay #SyndromeWithoutAName

[SWAN UK (syndromes without a name) @SWAN_UK]

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

[SWAN UK (syndromes without a name) @SWAN_UK]

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

[SWAN UK (syndromes without a name) @SWAN_UK]

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

[SWAN UK (syndromes without a name) @SWAN_UK]

'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

[Annie Bannister @AnnieBannister]

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 (syndromes without a name) @SWAN_UK]

'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.

[SWAN UK (syndromes without a name) @SWAN_UK]

There is only 1 week to go until #UndiagnosedChildrensDay!

Who is ready?
👉 https://t.co/SB1Ty33NOr

[SWAN UK (syndromes without a name) @SWAN_UK]

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

[SWAN UK (syndromes without a name) @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 https://t.co/i8P4Fy6Jmh

[SWAN UK (syndromes without a name) @SWAN_UK]

@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! 😊