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cysticfibrosis.org.uk
Cystic Fibrosis Trust
@cysticfibrosis.org.uk
290 followers 35 following 68 posts
We're dedicated to uniting for a life unlimited for those living with cystic fibrosis. Our social & Helpline teams monitor our accounts between 9-5 weekdays.
cysticfibrosis.org.uk
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cysticfibrosis.org.uk
Cystic Fibrosis Trust @cysticfibrosis.org.uk · May 20
Hi! 👋🏻 We’re Cystic Fibrosis Trust, working to make sure everyone with CF can live a life unlimited.

We're new to Bluesky but you can expect stories, updates and ways to get involved 💛

To find out more head to our website or feel free to say hi!

➡️ www.cysticfibrosis.org.uk
Cystic Fibrosis Trust Homepage | CF Trust
www.cysticfibrosis.org.uk
cysticfibrosis.org.uk
The helpline will close today, Tues 23 December, at 12pm, and reopen on Fri 2 January at 10am. If you get in touch with us between these dates, we'll get back to you as possible on our return.

We want to wish you a happy and safe festive break, and look forward to seeing you in the new year. ⭐
December 23, 2025 at 9:00 AM
cysticfibrosis.org.uk
After two Christmases spent in hospital with cystic fibrosis, Emma's wish for 2025 is simple – a day at home with her husband, cuddles with the cats, and enough roast potatoes to go round. 💛

Head to our website to read Emma's story.

❄️ https://ow.ly/IkEF50XKLZ3
December 18, 2025 at 8:00 AM
cysticfibrosis.org.uk
Early results from CF STORM, a clinical trial looking at new ways to reduce treatment burden for people with CF have now been released.

Dr Gwyneth Davies, co-Chief Investigator of the study, explains what we know so far.

➡️ https://ow.ly/bJmZ50XKj1L
December 16, 2025 at 2:37 PM
cysticfibrosis.org.uk
Last month, over 200 scientists and clinical teams joined us to hear the latest news on lab-based and clinical research. From cutting edge research in the lab, to using UK CF Registry data in clinical trials, it was a packed two days. At the heart of the conference were your research priorities. 1/2
December 3, 2025 at 10:42 AM
cysticfibrosis.org.uk
Have you got your tickets yet? ❄️

Play our Christmas Raffle today for the chance to win up to £2,000!
Every £1 ticket helps fund life-changing research and provides vital support. 💛

✨ Tickets are just £1 and the closing date is 12 January 2026.

🎟️ https://ow.ly/oWVc50WVJuZ
November 27, 2025 at 1:47 PM
cysticfibrosis.org.uk
The Exercise as an Airway Clearance Technique in people with cystic fibrosis preliminary study looked at whether exercise can safely replace traditional chest physiotherapy in people with CF as an airway clearance method.

Visit the ExACT-CF post on our Trials Tracker.

➡️ ow.ly/tKkm50Xy2JI
ExACT-CF: A trial investigating whether exercise can replace chest physiotherapy for airway clearance in people with CF
ow.ly
November 26, 2025 at 11:33 AM
cysticfibrosis.org.uk
Today, Lilian Greenwood, Labour MP for Nottingham South, visited Dr Rian Griffiths at the University of Nottingham, to find out more about her work in infection detection for people with CF during world AMR awareness week. 🔬

Read more ➡️ https://ow.ly/lVQ250XvXoJ
November 21, 2025 at 6:15 PM
cysticfibrosis.org.uk
Thanks for having us! @youthvoice.ncb.org.uk
youthvoice.ncb.org.uk Youth Voice @ National Children's Bureau @youthvoice.ncb.org.uk · Nov 19
Ellie Mindel & Tilly Green from @cftrust showed how their Youth Advisory Group (YAG) empowers young people with CF to shape research, create resources & balance fun with meaningful involvement.
How have you seen youth voice make a difference?
#CysticFibrosis #YouthVoice #MPWPractitionersCoP
November 19, 2025 at 12:48 PM
cysticfibrosis.org.uk
This week is World Antimicrobial Resistance Awareness Week and this #ResearchWednesday we wanted to explain why preventing and tackling antimicrobial resistance is so important to people with #cysticfibrosis.

➡️ www.cysticfibrosis.org.uk/news/improvi...
November 19, 2025 at 10:27 AM
Reposted by Cystic Fibrosis Trust
lifearc.bsky.social
Patient voices have been involved at every stage of establishing a UK-wide network of research hubs improving how lung infections are managed. Read more about how we work with patients: https://www.lifearc.org/work-with-us/patients-community/

@cysticfibrosis.org.uk
November 13, 2025 at 9:15 AM
cysticfibrosis.org.uk
Have you got your tickets yet? ❄️

Play our Christmas Raffle today for the chance to win up to £2,000!
Every £1 ticket helps fund life-changing research and provides vital support. 💛

✨ Tickets are just £1 and the closing date is 12 January 2026.

🎟️ https://ow.ly/oWVc50WVJuZ
November 16, 2025 at 6:00 AM
cysticfibrosis.org.uk
Through the research we fund, we want to prevent #cysticfibrosis complications from developing and improve how they are treated and managed.

Visit our website to find out more #ResearchWednesdays

➡️ ow.ly/kNa950Xmn2V
November 5, 2025 at 12:00 PM
cysticfibrosis.org.uk
This week we’re shining a spotlight on some of the additional symptoms and complications of CF outside of the lungs, from gut symptoms and diabetes to fertility and bone health.

➡️ ow.ly/HW7g50XlCJQ

#cysticfibrosis #cftrust #notjustlungs
November 3, 2025 at 12:28 PM
cysticfibrosis.org.uk
Following approval for its use in England, Alyftrek (vanza triple) is now available in Northern Ireland and Wales

Head to our website to find out more about this news, as well as FAQs about Alyftrek.

➡️ https://ow.ly/Mfym50XlBoM

#cysticfibrosis #alyftrek
November 3, 2025 at 9:25 AM
cysticfibrosis.org.uk
Scientists in our MAGNIFY SRC are exploring how new types of lung MRI scans might be used in CF research and for CF care in the future. It involves researchers around the country coming together to apply their different expertise.

➡️ ow.ly/6ZvL50XjCCu
October 29, 2025 at 9:57 PM
cysticfibrosis.org.uk
Have you used the Trust's Clinical Trials Tracker to find information about trials you or your child could take part in?

Would you be willing to share your experiences to help others learn more about CF clinical trials?

If you’re interested please email at [email protected]
October 27, 2025 at 2:55 PM
cysticfibrosis.org.uk
We’re excited to see Dr Gwyneth Davies present early date from CF STORM, a much anticipated research study, at #NACFC tomorrow. This study was shaped by people with CF, using CF Registry data, to find ways to help reduce treatment burden.

➡️ https://ow.ly/M48150Xhr3w
October 24, 2025 at 10:45 AM
cysticfibrosis.org.uk
If you are an innovator, our support can accelerate the design and delivery of your clinical trials. We’ll be at the North American CF Conference #NACFC this week.

Please come and find us to talk about our research support offer or email [email protected] to find out more.
A logo in the centre of screen with a yellow background and dark blue text says "Cystic Fibrosis Trust". Below it, it reads "We can help at every stage of the research pipeline.
October 22, 2025 at 9:40 AM
cysticfibrosis.org.uk
We’re attending Health Data Research UK conference this week in Glasgow, where we have a poster on embedding clinical trials into the UK CF Registry, gaining e-consent and collecting patient reported outcome measures.

Visit us at poster number 1 to find out more.

#HDRUKConference #cysticfibrosis
October 15, 2025 at 9:03 AM
Reposted by Cystic Fibrosis Trust
ewartkuijk.bsky.social
How many healthy cells are needed to tip the balance in favor of recovery through hashtag#genetherapy? PhD-student Jari Bulkens is tackling this question and his innovative approach just earned him a poster prize at the #UKCFC in London!
October 9, 2025 at 4:33 PM
cysticfibrosis.org.uk
Last week saw scientists and clinicians come together for #UKCFC, the UK's biggest conference dedicated to CF research, from biomedical science to improving clinical care. 🔬

It was inspiring to see the research community uniting to bring us closer to a life unlimited for everyone with CF. 💛
October 8, 2025 at 2:36 PM
cysticfibrosis.org.uk
Are you looking for a rewarding new role, where you can work hard, have fun and really see the impact of your work?

We're currently recruiting for a new vacancy on a part time basis:

⭐ Information Officer

➡️ https://ow.ly/iNFM50W1vsg
October 3, 2025 at 1:54 PM
cysticfibrosis.org.uk
"Even with the huge advancements in recent decades with Kaftrio, it is reassuring to know that researchers are not stopping; if anything, they're pushing on faster and with more determination."

Lucy Baxter shares some of her key takeaways from day 1 of #UKCFC.

➡️ https://ow.ly/xRGI50X5KLS
October 2, 2025 at 5:10 PM
cysticfibrosis.org.uk
Dr Jamie Duckers shares his insights from day 1 of #UKCFC! We’ll be back here and over on our Instagram stories tomorrow to cover day 2! 🔬
#cysticfibrosis
October 1, 2025 at 4:20 PM
cysticfibrosis.org.uk
An insight from Professor Daniel Peckham on conference highlights so far! #UKCFC #cysticfibrosis
October 1, 2025 at 12:48 PM