Cystic Fibrosis Nursing Team@BWC

Spotted: the BT Tower in London getting involved with #WearYellowDay this year! 💛🎉

#amp-readmore-target" target="_blank" rel="nofollow noopener">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.

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

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

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

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 cfyouth@cysticfibrosis.org.uk

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

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!!

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

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 - cfyouth@cysticfibrosis.org.uk

📣 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)

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

Fab parent event today. Lots of positive and inspirational speakers. @cftrust @nhsuhcw

Cystic fibrosis: Concern over access to Kaftrio, Orkambi and Symkevi bbc.co.uk/news/uk-northe… #cysticfibrosis #kaftrio #RightToBreathe

Please share. Children with CF need you ❤️ actionnetwork.org/forms/cf-drugs…

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

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-drugs… #kaftrio

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! 💛

@VertexSaveUs @CFcarer @cffschroeder @JohnsonMNicola @liammchugh1961 @ma