@soft_uk

SOFT UK provides information and support for those affected by Trisomy 13, Trisomy 18 (Patau's and Edwards' syndrome) and related disorders

 United Kingdom
soft.org.uk
Joined January 2011
  • Tweets2.5K
  • Following219
  • Followers580
1.2KMedia
#BabyLossAwarenessWeek begins today & we are proud to lead over 130 charities taking part 💙💗 There are so many ways you can get involved to help us improve awareness of #BabyLoss, remember every baby & offer a safe space for support. ➡️sands.org.uk/BLAW #BLAW #BLAW2023
Image of Baby Loss Awareness Week Pink and Blue ribbon logo

ALT Image of Baby Loss Awareness Week Pink and Blue ribbon logo

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Today marks the first day of #BabyLossAwarenessWeek. This is the 21st Baby Loss Awareness Week in the UK, and whilst it has grown over time, the aims of the week remain the same. This week we join together to remember our babies, raise awareness, and drive change 💖💙
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We'd love to take a look back at the incredible things you've done to raise money for our campaign and show you some love by sharing your stories and images as part of our 'Fundraising Hall of Fame'. 🏷️ Tag your fundraising besties & share your Jeans for Genes stories 😀👖4️⃣🧬
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Our ambition is that EVERY family in the UK impacted by a genetic condition can access the support when they need it most. Take part in Jeans for Genes week & we can all work together to make this ambition a reality. Get your fundraising pack today 👉 jeansforgenes.org/sign-up
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In the episode of the Our Sam Talking out Loud podcast series, Philippa will be talking to @MiscarriageA about #PregnancyLoss #babyloss and Workplace support and we’d love your input as an employee or an employer
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Check out this 4 min chat with Steve Smith and WCG Patient Forum about the challenges of a general diagnosis, perseverance, and how genetic differences accounts for unexpected health. Thank you, Steve for the invite! Tune in buff.ly/3H5D4e3
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Our Director of Policy, Nick, shares his thoughts on ‘Can Gene Therapies Beat Rare Disease?’ with @Tech_Networks. 👀 technologynetworks.com/bioph…
a line illustration of people skipping, the ropes are seen to be DNA strands

ALT a line illustration of people skipping, the ropes are seen to be DNA strands

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Y10 Kierin, and his friends, organised a bake sale in support of the genetic condition Trisomy. We raised over £100 for the charity @soft_uk #charity #bakesale #trisomy
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Trisomy18 awareness day xxx @Trisomy_SOFT @soft_uk @Trisomy18 @EdwardsSyndrome
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Today is Trisomy 18 or Edward's syndrome Awareness Day. Each and every day the families affected live with the consequences of this syndrome. Visit the exhibition at samebutdifferentcic.org.uk/y… #edwardssyndrome #trisomy18 @soft_uk @illumina
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The BDB Network News is OUT NOW!! Full of #RareDiseaseDay News, Views and more... Featuring... @rarediseaseday @GeneticAll_UK @RareRevolutionM @DHSCgovuk @GOVUK mailchi.mp/291226b60140/rare…
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.@UniOfOxford discuss how they have partnered their expertise with that of others, with the goal of driving cutting edge breakthroughs to meet the needs of those living with #RareDiseases. Find out more in #CareForRare, with @ITN Business: raredisease.org.uk/careforra… #RareDiseaseDay
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Stacy went on 5 cruises & traveled to almost every conference. The girl smiled as soon as she saw the palm trees. She was in her happy place! Everyday counts & make sure you remember the joy not the heartaches. - Barb VanHerreweghe SOFT President & Stacy's Mom #Trisomy18
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David has taught us to never give up! #TogetherWeCan #TrisomyAwarenessMonth #TrisomyStrong #Trisomy18 #EdwardsSyndrome
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We know Mother's Day can be a difficult time for anyone who has been through #PregnancyLoss or the death of a baby 💙🧡 What special ways do you remember that you're #StillAMum on Mother's Day? #MothersDay #MothersDay2023 #BabyLoss
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It is day 5 of #TrisomyAwarenessMonth! Today we are celebrating our friends and family members with #Trisomy5. Make sure to wear your red & light blue and drop a photo in the comments to show your support! #TogetherWeCan #TrisomyAwareness #TrisomyAwarenessMonth #TrisomyStrong
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It is the first day of #TrisomyAwarenessMonth! Today we celebrate our friends and family members with Trisomy 1. If you are a Trisomy 1 family please say hello in the comments! 💁‍♂️ #TrisomyAwarenessMonth #Trisomy18 #EdwardsSyndrome #Trisomy13 #PatauSyndrome #Trisomy9
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Today is #RareDiseaseDay!🎉 In just half an hour we launch our report, share our #CareForRare campaign and begin our day of raising awareness for the 3.5 million people living with a rare condition in the UK. With your help, we can make this year the biggest yet! Who's with us?
Rare Disease Day 2023

ALT Rare Disease Day 2023

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Replying to @mancini_smith
@mancini_smith @NeoResearch_Net @TheEPT @SUFCAllTeams @mrpeterbyrom @MCR_SB_Research @twinstrustbsg @BLA_Campaign @soft_uk would it be possible to share? Thank you ❤️
OurSamBabyLossCharity@OurSamCharity20 Feb 2023
Replying to @PhilippaWriter
@philippawriter and Trustee @lauraannmannion would like your input for their special #mothersday podcast If you’ve been affected by #pregnancyloss #babyloss as a mum, dad or partner please take a few minutes to complete the survey Thank you surveymonkey.co.uk/r/MYMHTQZ
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It's #RareDiseaseDay! Today is all about raising awareness and generating change for the 300 million people worldwide living with a rare condition, their families and carers. Keep an eye out on our feeds throughout the day – @GeneticAll_UK @rarediseaseuk #CareForRare
Today is Rare Disease Day

ALT Today is Rare Disease Day

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