For #Undiagnosed ChildrensDay today I'm sharing this post again which explains why we love SWAN UK (syndromes without a name) and why we need to spread the word to reach all those other families feeling isolated and alone!
It's not rare to be rare or #Undiagnosed
theinclusivehome.co.uk/swan-uk-is-so-…
#ROARsome
It's #Undiagnosed ChildrensDay As you all know Lennon was an extremely complex child + to this day remains #Undiagnosed 🌈🦋 I have no photos of him dressed as a superhero, so I had this beautiful illustration drawn of him ❤️ He will always be my superhero #UCDsuperhero
#UndiagnosedChildrensDay Amazing Mothers share their experience of #RareDisease Diagnosis. We are proud to be part of this community #RareSpecialPowers @CDG_Portugal Pitt Hopkins UK DrPasEle with many thanks to Findacure has become Beacon, follow us @RareBeacon twitter.com/findacure_fdn/…
Ahead of #UndiagnosedChildrensDay2023 tomorrow, we were on BBC Breakfast to discuss the challenges that families face when seeking a #diagnosis for an #undiagnosed condition.
Please help share to ensure all famililes who could use the support of SWAN UK can do so. 1/2 👇
Fabulous day with SWAN UK - Cymru today to help mark #Undiagnosedchildrensday #myswan Sparkle Serennau Children's Centre
SWAN UK (syndromes without a name) Genetic Alliance UK Maria Ressa Genomics Partnership Wales (GPW) The All Wales Medical Genomics Service
A very special Friday in our house! #UndiagnosedChildrensDay is here, and we are proudly supporting whilst we hit M&S for his fave sandwich & the sun is out! 16yrs & counting being undiagnosed, but living his best life! SWAN UK (syndromes without a name) NHS Greater Glasgow and Clyde Office for Rare Conditions Glasgow Royal Alexandra Hospital Neonatal Unit
#UndiagnosedChildrensDay2023
SWAN UK (syndromes without a name) has given us a lifeline through their support.
They have supported our family for over 10yrs.
Nellie is 12yrs old and is undiagnosed 💕
#undiagnosed childrensday #swanuk #undiagnosed
Happy Undiagnosed Children’s Day to every child, parent, friend, sibling, grandparent, family member affected by a syndrome without a name. Yesterday we shared our Q&A with families in SWAN Ireland on our SWAN UK (syndromes without a name) Twitter takeover 🦢 #UndiagnosedChildrensDay
Tomorrow is #UndiagnosedChildrensDay . Thanks to BBC Breakfast for highlighting that each year around 6,000 babies are born in the UK with a very, very rare change to their genetic code which means they may be the only person with that change, or one of a handful around the world
Today is #undiagnosed childrensday raising awareness of #undiagnosed genetic conditions and the charity SWAN UK (syndromes without a name) Brody is my # #UCDsuperhero A total superstar ⭐️ Sally Phillips Dan White @Lady_Simmonds Anne Wafula Strike @MumsMissions Sarah Brisdion @samrenke
Many children suffering from #RareDisease remain undiagnosed. Together we can push for better research to improve their lives!
#UndiagnosedChildrensDay 2022
#UndiagnosedChildrensDay
TEDDY Network CVBF EURORDIS-Rare Diseases Europe MetabERN Patient Worthy Duchenne Data Foundation
Great to mark #Undiagnosedchildrensday with SWAN UK - Cymru SWAN UK (syndromes without a name) today at Serennau Children's Centre Sparkle #myswan 🦢 & great to meet the fab A&SAnimalEncounters too! 🦔🦎🪱🐢 Genetic Alliance UK Health and Care Research Wales Genomics Partnership Wales (GPW) The All Wales Medical Genomics Service Rare Disease UK
Virtual disco fun with SWAN UK (syndromes without a name) after school 💕 Party Peeps thank you Nellie, George and Arthur had lots of fun! #UndiagnosedChildrensDay
Today is #UndiagnosedChildrensDay !
Together with our 80+ partners from all across 🇪🇺 we are doing our best to solve the unsolved #RareDiseases !
Genetic Alliance UK SWAN UK (syndromes without a name) Rare Voices Australia #ePAG uniamomalattierare Wilhelm Foundation Udninternational FEDER | Enfermedades Raras
Thinking of our oversease friends SWAN UK (syndromes without a name) @UDNI Wilhelm Foundation SWAN USA SWAN Ireland @UDN_Peer EURORDIS-Rare Diseases Europe IndoUSrare in raising awareness of undiangosed genetic conditions on their #UndiagnosedChildrensDay today.
Our founder is wearing Pink
On his #FindYourPower SuperheroSeries #Recumbent #Tricycle to mark
#UndiagnosedChildrensDay #UCD2022
In support of SWAN UK - Cymru SWAN UK (syndromes without a name) #Pinkathon
Today is #UndiagnosedChildrensDay ! Together we can increase #Awareness . 🤝📢
#UndiagnosedChildrensDay 2022
CVBF @EPTRI4 Cincinnati Childrens Division of Asthma Research Women & Children's Health Research Institute European Patients' Forum Canadian Paediatric Society Rare Patient Voice PREFER: patient preferences
Today is #UndiagnosedChildrensDay … Many of our #NCBRS people where undiagnosed for many years until the discovery of Nicolaides-Baraitser Syndrome (NCBRS).
Show your support and help SWAN UK (syndromes without a name) turn the internet pink for #UndiagnosedChildrensDay 2022 💕
#UndiagnosedChildrensDay SWAN UK (syndromes without a name) KBG Foundation Genetic Alliance UK Marie-Louise Connolly my beautiful girl is one of around 500 people in the world who have kbg syndrome and was diagnosed thanks to Shane McKee #ShareTheShore
Retweet to raise awareness for #undiagnosed childrensday2022 by SWAN UK (syndromes without a name)
#SwanUK #undiagnosed #undiagnosed illness #undiagnosed childrensday #pinkathon #awareness #advocacy #diagnosis #diagnosticodyssey #raredisease #health #medicine #doctor #m4rd #medics4raredisease
Each year 65,000 children🧒 are born with an undiagnosed genetic condition in Europe
On #UndiagnosedChildrensDay we call for a global collaboration via data-sharing & diagnostic platforms to reduce inequalities in access to diagnosis & care.
👉l.eurordis.org/IGm
On #undiagnosedchildrensday Thanks to all the support, time & care the Clinical genetic Consultants & SpR’s GOSHCharity give,trying to find a diagnosis for the children &young people with no diagnosis #ROARsome Jane Wendy Jones Eleanor Dhanda Richard Scott @athina66
It’s #UndiagnosedChildrensDay today. Please show your support to SWAN UK (syndromes without a name). Here is something I wrote about going into the unknown with an #undiagnosed child. #UCD2023
