The official twitter page for the Cystic Fibrosis Nursing Team at Birmingham Children's Hospital @BWC_NHS. All tweets by the Cystic Fibrosis Nursing Team.
Joined August 2022
- Tweets170
- Following40
- Followers48
- Likes148
Cystic Fibrosis Nursing Team@BWC retweeted
Spotted: the BT Tower in London getting involved with #WearYellowDay this year! 💛🎉
Cystic Fibrosis Nursing Team@BWC retweeted
express.co.uk/news/uk/189803… EXCLUSIVE Patients tell of @NHSEngland @DHSCgovuk medicine shortage fears as vital #cysticfibrosis drug #creon is in critical short supply. @Daily_Express @RishiSunak @VictoriaAtkins @cftrust
Hi we will be deleting this account in 7 days. Please follow us on @BWCCFTeam instead.
Cystic Fibrosis Nursing Team@BWC retweeted
The new combination treatment outperformed the approved CFTR modulator therapy Trikafta at reducing sweat chloride levels in Phase 3 trials. buff.ly/3Urz5A5 #cysticfibrosis #cfwarrior #curecf #cysticfibrosislife
ALT An illustration of a clinical trial line chart.
Cystic Fibrosis Nursing Team@BWC retweeted
This FeBrewary we are challenging staff at HQ to see if they can throw a teabag into the new FeBrewary mug! Try challenging your friends or work colleagues at your own tea party!
Check out our fundraising packs, and receive 10% off on our FeBrewary shop! ow.ly/4FTx50QxOlX
Cystic Fibrosis Nursing Team@BWC retweeted
The Your life and CF survey is back and we want to hear from you!
Last year, 1000 of you told us about your experience of life with CF.
Because of you, we were able to continue to campaign for long-lasting and meaningful change.
➡️ surveymonkey.com/r/YLCF24
Cystic Fibrosis Nursing Team@BWC retweeted
The Cystic Fibrosis Trust are excited to tell you about a 6-week Coding for Beginners online course for children with CF and their brothers and sisters ages 6-10. The workshops will start on 19/2/24, and will run every Monday 5-7pm until 25/3/24
[email protected]
Cystic Fibrosis Nursing Team@BWC retweeted
Great to see final part of @RyanJosephMarsh PhD on #CF gut microbiome & #CFTRmodulators out in the wild ⤵️
Impact of extended Elexacaftor/Tezacaftor/Ivacaftor therapy on the #cysticfibrosis gut microbiome
Made possible by @cftrust funding
@DWRivett @AlanRSmyth
Really pleased to share the pre-print for our manuscript looking at ETI therapy on the gut microbiome in pwCF!
medrxiv.org/content/10.1101/…
This concludes the work from my PhD - a huge thanks to my supervisory team @ChrisvanderGast @DWRivett @AlanRSmyth
And of course…
Cystic Fibrosis Nursing Team@BWC retweeted
Thank you @CFKidsUK for funding this travel nebuliser it will make life a little easier! @CF_Foundation @CFAware @cftrust So much time each day is taken up with preventative therapies this will help cut down a little time each day and mean we sometimes manage to arrive on time!!
Cystic Fibrosis Nursing Team@BWC retweeted
We have been made aware that there are ongoing issues with Creon 10,000 access, we have been informed there has been delivery this week and there should be next week, stock should be coming back into supply via pharmacies today @CFAware @cftrust @CF_dietitians @NHSL_Dietetics
Cystic Fibrosis Nursing Team@BWC retweeted
The Youth Advisory Group have a new logo! "We're a group of people aged 14-25 with CF, or with a close family connection to someone with CF. We work on our own projects to solve problems we see children with CF facing." To get involved email - [email protected]
Cystic Fibrosis Nursing Team@BWC retweeted
📣 Calling all CF parents!
We’re developing our support for families following their baby’s #cysticfibrosis diagnosis, and we’re asking for your help. (1/4)
Cystic Fibrosis Nursing Team@BWC retweeted
Following NICE's statement today, our Chief Executive, David Ramsden, has shared the following video, giving an update on where things stand.
You can read the statement from NICE here.
➡️ ow.ly/JlwO50QwhLv
Cystic Fibrosis Nursing Team@BWC retweeted
Cystic fibrosis: Concern over access to Kaftrio, Orkambi and Symkevi
bbc.co.uk/news/uk-northern-i… #cysticfibrosis #kaftrio #RightToBreathe
Cystic Fibrosis Nursing Team@BWC retweeted
Please share. Children with CF need you ❤️ actionnetwork.org/forms/cf-d…
Cystic Fibrosis Nursing Team@BWC retweeted
Our Chief Executive, David Ramsden, shares his perspective following NICE's announcement on Friday.
You can submit your feedback to the NICE consultation today.
➡️ ow.ly/wUfO50Q55kK
You can also read our updated FAQs on our website now.
➡️ ow.ly/PeJ650Q55ou
Cystic Fibrosis Nursing Team@BWC retweeted
100,000 people around the world agree that people with #cysticfibrosis have the #RightToBreathe
If you also agree then please sign and share the petition for global access to @VertexPharma's CF modulator therapies at a fair price
PETITION:
actionnetwork.org/forms/cf-d… #kaftrio
Cystic Fibrosis Nursing Team@BWC retweeted
Please everyone take time to read this and retweet. Finley already has access to the drug they are now stopping the younger generation from having due to greed of Vertex! It has been a game changer for finley and all the cfers behind him deserve the same! 💛
Please like, share, retweet and make your own!
#SaveUs #CysticFibrosis #VertexSaveUs #LivesBeforeProfit #Kaftrio @cftrust @CF_Foundation @VertexPharma @VertexSaveUs @strawfie @BBCLookNorth @BBCNews @itvnews @Channel4News @NICEComms @NHSuk @BBCNewsround @guardiannews @thetimes
Cystic Fibrosis Nursing Team@BWC retweeted
Been chatting to a lad this morning who’s little fella has Cystic Fibrosis, as you all know this is close to my heart, please can you all take time and sign this below for the support to allow ALL CF patients to receive medical treatment, please get behind this… would me the world to me and the family!! Thank you!! #SupportCF #FW 💜
actionnetwork.org/forms/cf-d…
