SOFT UK provides information and support for those affected by Trisomy 13, Trisomy 18 (Patau's and Edwards' syndrome) and related disorders
United Kingdom
- Tweets 2,530
- Following 219
- Followers 580
- Likes 824
We are pleased to announce that our upcoming webinar is now free to attend for all participants. If you'd like to attend, or know someone who this topic would benefit, then please click the link for more information.
soft.org.uk/news/online-webi…
#trisomy #trisomy13 #trisomy18
1
3
1,237
Today we are sharing a new family story on our website 'Spark of Hope: Lorelei's Story'
You can find the story here: soft.org.uk/family-stories-1…
#trisomy #trisomy13 #trisomy18 #trisomystory #tam2024
1
2
163
We are excited to announce that SOFT UK will be working with Making Families Count on a webinar titled: Hearing the Parent Voice – Caring for a Child with Complex Needs
For more details: shorturl.at/qLPQS
To book: shorturl.at/yGKUW
2
5
438
Today is the first day of Trisomy Awareness Month 2024!
We'd love to hear from you in the comments about what Trisomy Awareness Month means to you?
#trisomy #trisomyawarenessmonth #trisomyawarenessmonth2024 #tam2024
1
3
180
As February draws to a close, we usher in a month of advocacy, education, and unity in support of Trisomy Awareness Month.
To find our what activities we will be hosting during TAM 2024, and how you can get involved, follow the link here: soft.org.uk/news/trisomy-awa…
1
1
2
90
We will be hosting our Coffee With SOFT Zoom call tonight at 19:30. If you'd like to come along and chat with other members of the community and some of the team at SOFT UK, get in touch.
For an invite, email shaun.dowdall@soft.org.uk
74
Last call for your SING for SOFT submissions. If you've got a song in you and you'd like to submit a video for our show on Friday, please email it to shaun.dowdall@soft.org.uk
#christmassong #music #charity
61
A new study at the University of Oxford is trying to understand whether health-related quality-of-life measures capture the lived experience of people with rare genetic conditions and their families.
Apply to take part.
shorturl.at/zCMS8
#research #trisomy13 #trisomy18
1
114
We'd like to invite you to our Living With Trisomy family call on Tuesday 14th at 19:00
The call is for families living with Trisomy 13 or Trisomy 18.
For a call invite, please email sarah.bowell@soft.org.uk
#familycall #trisomy13 #trisomy18
1
109
This December we will be hosting our Sing For SOFT event! We heard some incredible performers, and can't wait to see what's in store for this years event.
Email shaun.dowdall@soft.org.uk for details
#music #trisomy #trisomy13 #trisomy18 #charityevent
1
119
Incase you missed it, our SOFT Scotland Family Day event page is live.
We have presentations from the team at SOFT, partner charities, professionals, and SOFT UK families available to watch there.
soft.org.uk/scotland-family-…
#familyday #ukcharity #trisomy13 #trisomy18
80
Happy Halloween!
We hope you're doing something exciting and would love to hear what you and your family are dressing up as this Halloween.
#halloween #family #festivity
1
1
57
If you'd like to share a photo or message for our Baby Loss Awareness Week 2023 page, then please get in touch.
You can find the page here: soft.org.uk/baby-loss-awaren…
#babyloss #babylossawarenessweek #blaw #trisomy #trisomy13 #trisomy18
3
69
SOFT UK retweeted
#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
ALT Image of Baby Loss Awareness Week Pink and Blue ribbon logo
1
106
176
21,805
SOFT UK retweeted
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 💖💙
19
430
1,230
171,482
Our Baby Loss Awareness Week 2023 page is now live. To share a photo in one of our remembrance frames, or share a quote, saying, poem, or anything else that has helped you, please email sonia.sankoli@soft.org.uk
The page can be found here:
soft.org.uk/baby-loss-awaren…
#blaw2023
29
We will be hosting a call on Friday 13th at 19:30 during Baby Loss Awareness Week.
Please get in contact if you'd like to join and speak with families and members from SOFT UK.
Email sonia.sankoli@soft.org.uk for an invite.
#babylosswareness #blaw2023
41
We wanted to remind you that you can register directly with SOFT UK to keep up to date with our latest news.
To register with SOFT UK, follow the link: soft.us6.list-manage.com/sub…
#trisomy #trisomy13 #trisomy18
1
47
We are in the early stages of gathering data and need your help!
soft.org.uk/news/trisomy-131…
#trisomy13 #trisomy18 #trisomy
1
2
46
We are counting down the days until our Scotland Family Day!
If you're interested in joining us and other families from the community, follow the link below:
eventbrite.co.uk/e/scottish-…
#trisomy #trisomy13 #trisomy18 #familysupport #familynetworking
47