Wow! Look at all the amazing costumes from staff and pupils at Snowdon Village.

They were raising money for SWAN UK (syndromes without a name) and helping to raise awareness on #UndiagnosedChildrensDay . Thank you to everyone involved, it looked like a great day for everyone!

Did you know that even if disabled parent carers claim PIP themselves due to their own disabilities, they can still claim carer's allowance due to caring for their disabled children. Disabled people can also be carers too!

Read more on our website: ow.ly/G48Z50RuFwR

People living with #RareDisease must often manage their own care. The burden of care coordination can create pressures across the lives of patients, their families and carers.

Help us #ElevateCareForRare #IAmNumber17

Check out

iamnumber17.org.uk

cc
Sophie Buckley

What's it like to have a child with an undiagnosed condition?

Researchers at Illinois Institute of Technology want to better understand the challenges and needs you face. Learn more about the study and complete a 20 to 30 minutes to get involved. 👉 ow.ly/F3Rs50Rvs90

Genetic Alliance UK have released their report showing just how important it is for our community to be able to access support, such as therapy.

The report documents the positive impact it can have on individuals, relationships, and on the wider family.
ow.ly/omqs50RuMyl

Would you like to be part of a community that’s helping to shape the future of health care in Wales?

Applications to join our Patient and Public Sounding Board are now open for 2024!

Find out more: ow.ly/mxxE50Rty0L

#AddYourVoice #GenomicsWales

Jenni Minto MSP SWAN UK (syndromes without a name) PIP-UK We also look forward to taking up the offer from the Minister to share and discuss the priorities around #pathways of care, faster and better #diagnosis and #CareCoordination raised at the meeting.

Thank you again to all the attendees.
SWAN UK (syndromes without a name) PIP-UK

Jenni Minto MSP SWAN UK (syndromes without a name) PIP-UK Genetic Alliance UK will continue to work with the Scottish Government to ensure the needs of #undiagnosed children and their families are recognised in the refresh of #Scotland ’s #RareDisease Action Plan.

SWAN UK (syndromes without a name) #UndiagnosedChildrensDay

Thank you Julia and Jack. Your stories really shone through on the night. You should both be very proud.

Thank you to everyone who attended our Scottish Parliament meeting to mark Undiagnosed Children’s Day last night. Big thanks to Bob Doris for his continued support and for sponsoring the event.

#UndiagnosedChildrensDay

Last night Genetic Alliance UK hosted an event for #UndiagnosedChildrensDay in the Scottish Parliament. It was a great evening to shine a light on young people living with rare, genetic and undiagnosed conditions.

Better late than never ... but long awaited moments like this make it all worth it 🥰 He hasn't tried to say Mum since Xmas Day eeeeek #undiagnosedchildrensday #specialmemories Canolfan Yr Enfys SWAN UK - Cymru SWAN UK (syndromes without a name) Genetic Alliance UK Unique

So proud of our girl 💕

SWAN UK (syndromes without a name) Genetic Alliance UK

**we asked Nellie if she wanted to be involved and her reply was “we’ve got to” she’s proud to be a member of SWAN UK**

#undiagnosed #syndromeswithoutaname

We know there are so many families affected by undiagnosed genetic conditions who feel isolated and alone. With your help we hope more of them can find us and join our supportive community. Thank you for your support this Undiagnosed Children's Day. geneticalliance.org.uk/swanuk

'SWAN UK has helped me realise I’m not alone. There is a world out there with children with disabilities where the cause it not known. At SWAN UK we all share the same challenge and navigating the world of the #undiagnosed together.' Help families find us by sharing this post.

Last Undiagnosed Children's Day SWAN UK featured on BBC Breakfast! Watch here: fb.watch/rHGEnudksl/ via facebookwatch
#UCD2024

Listen to Emma Mangan on BBC Radio Merseyside!
2 hours 13 mins in: bbc.co.uk/sounds/play/p0…
Please share to help families find SWAN UK sooner.

In support of “Undiagnosed Children’s Day” (26 Apr 2024) read Voices blog by Miriam Ingram SWAN UK (syndromes without a name) #SyndromesWithoutAName to help more families affected by a syndrome without a name to find SWAN UK sooner.
buff.ly/3Wz8emT
#UCD2024 #undiagnosed