SWAN UK (syndromes without a name)
@SWAN_UK
SWAN UK (syndromes without a name) is run by @GeneticAll_UK offering support and information to families of children with undiagnosed conditions. #undiagnosed
ID:296341919
http://www.undiagnosed.org.uk 10-05-2011 16:04:33
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📣 We have an updated SWAN UK flyer! Perhaps you're a healthcare professional that could share some to help more families find SWAN UK sooner? Let us know here or by emailing [email protected].
#undiagnosed #SyndromeWithoutAName #UndiagnosedGeneticCondition #UCD2024
Emma Hughes (@GeneticAll_UK )speaking SWAN UK (syndromes without a name) SWAN UK - Cymru at the celebrating 20 (21) years of #Patient engagement Wales Gene Park
#RareDisease
#Genomics
#DNA
Still time to sign up for our next Virtual Genomics Café Thurs 25 April 11-12:45pm! Grab a cuppa and listen to talks on genomics & rare conditions, from our four fab speakers👏Book here: rb.gy/yfrybx/ Public Health Wales The All Wales Medical Genomics Service Swansea University SWAN UK (syndromes without a name) SWAN UK - Cymru 🧬☕️
📣 Help us reach more families this April by sharing our reel! 📣 SWAN UK is the only dedicated community for UK based families of children aged 0-25 years old who are searching for a genetic diagnosis. #UCD2024 #SyndromeWithoutAName #UndiagnosedGeneticCondition #SWANUK
Our Parent Rep, Lisa Beaton, hosts Genomics England's latest podcast episode! The panel including our CEO Louise Fish discuss the impact on parents of children with rare conditions, who received a no primary findings result after diagnostic whole genome sequencing.
Happy International Women’s Day! We want to thank all the incredible women in the SWAN UK community, many of whom help us reach out to families affected by a syndrome without a name so they know they're not alone.
#InternationalWomensDay #IWD2024 #SyndromesWithoutAName
RARE DISEASE DAY
70% of genetic rare diseases start is childhood and there are currently over 6000 identified rare diseases.
Check out Rare Disease Day and SWAN UK (syndromes without a name) for ways in which you can help spread awareness for children and their families.
3.5 million people in the UK (children & adults) have a rare condition. SWAN UK (syndromes without a name) has information about living with a genetic, rare or undiagnosed condition. tinyurl.com/PVswnlvw222. #parents #RareDiseaseDay2024
#RareDiseaseDay2024
And guess what…today is the rarest day of the year! 🧬
SWAN UK (syndromes without a name) support families affected by undiagnosed genetic conditions in the UK Genetic Alliance UK Rare Disease UK
Love and fairy dust
Fairy Mango 🧚
#pyjamafairies #charity #helpingchildrensparkle
Today is the rarest day of the year plus it’s Rare Disease Day 🧬
SWAN UK (syndromes without a name) support families affected by undiagnosed genetic conditions in the UK & they have supported our family for the past 11yrs.
We love someone rare #Nellie 💕
Genetic Alliance UK #undiagnosed #RareDiseaseDay
#RareDiseaseDay2024 tomorrow. Still rare. Still waiting. Still brave. Slightly more cheeky ;-)
Only 1 more sleep until #RareDiseaseDay ! Around 6,000 children are born in the UK every year with a condition so rare it doesn't have a name. Genetic Alliance UK #SyndromesWithoutAName #StoriesBehindTheStats . RT to help spread the word.
SURPRISE - We do too!
By unifying Genetic Alliance UK, Rare Disease UK and SWAN UK into one centralised website and information hub, anyone can more quickly and efficiently access the range of information and support available across our brands.
👀 geneticalliance.org.uk/support-and-in…
Can you imagine having a child with a condition so #rare it doesn't have a name? SWAN UK supports families affected by undiagnosed genetic conditions in the UK.
Genetic Alliance UK #undiagnosed #SyndromeWithoutAName #StoriesBehindTheStats #RareDiseaseDay
