SWAN UK (syndromes without a name)

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/new-leafl…

How are genetic conditions diagnosed? Watch our new animation to find out: youtu.be/78XZ-F-ovT0?si… #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…

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/1FAI…

'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/rosieundi…

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 👇

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

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

'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

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.

There is only 1 week to go until #UndiagnosedChildrensDay! Who is ready? 👉 ow.ly/cw4X50Vy3k5

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

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

@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! 😊

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/…