The day of diagnosis with Cystic Fibrosis in the first pic to the second one turning 6. Darcey’s sweat Chloride result was 101 on 13 April 2018, roll on to today’s result of 15. A sweat Chloride test of under 40 is normal!! Here’s to a life unlimited 🎉🥳💛 #kaftrio @cftrust @cf

Cela fait de nbreux mois que le ministre me répond qu’il va «examiner» le remboursement du #Kaftrio pour des patients atteints de #mucoviscidose hors delF508. C’est pourtant une question de vie et de mort…Et les patients en bénéficient en France par ex. 7sur7.be/belgique/je-ne…

@ChrisMRiches @VertexPharma @NICEComms @NHSEngland @cftrust @VictoriaAtkins @NHSuk @RishiSunak If my daughter Sarah #CF had not had access to the wonder drug #Kaftrio, her chest would never have been good enough to have the #liver #transplant, which saved her life.

Love these @GoZwift @wattbike @Strava sprints versus myself Boom 💥 #cysticfibrosis #kaftrio

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express.co.uk/news/uk/189309… Great to see how some p/w #cysticfibrosis are doing on @VertexPharma drug #kaftrio. See @NICEComms … it is a drug worthy of being available on @NHSEngland ! @cftrust @VictoriaAtkins @NHSuk @RishiSunak

CF modulator therapies like #kaftrio have improved the lives of many #cysticfibrosis patients already. We want the Government to ensure access to these life changing drugs. PETITION petition.parliament.uk/petitions/6506…

Que no se nos olvide que la lucha continúa. Santi, por fortuna, sigue sus terapias y en breve su vida experimentará una revolución con la tan ansiada llegada del #Kaftrio. Seguiremos informando.

Asoc. Madrileña de Fibrosis Quística @AMadFQ

6 days ago

Que no se nos olvide que la lucha continúa. Santi, por fortuna, sigue sus terapias y en breve su vida experimentará una revolución con la tan ansiada llegada del #Kaftrio. Seguiremos informando.

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#CysticFibrosis : 'Kaftrio drug changed our lives,' say family bbc.co.uk/news/uk-englan… @BBCNews #Kaftrio

@VictoriaAtkins Whole heartedly support the ban on cigarettes 👏 and the damage they create. @VictoriaAtkins - could you share your position to ensure patients born with lung issue #cysticfibrosis continue to be able to access life saving medicines #Kaftrio #Orkambi - some face refusal .

It would be incomprehensible to deny #LifeSavingDrugs4CF to some #cysticfibrosis patients based on NHS contract renewal dates. #Kaftrio has given @myCFHero normal function / a future. We must dothe same for all patients. @VictoriaAtkins Will you #LetThemLive? @Daily_Express

Strawfie Challenge @strawfie

a week ago

It would be incomprehensible to deny #LifeSavingDrugs4CF to some #cysticfibrosis patients based on NHS contract renewal dates. #Kaftrio has given @myCFHero normal function / a future. We must dothe same for all patients. @VictoriaAtkins Will you #LetThemLive? @Daily_Express

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Nell and her brother both have #cysticfibrosis Thanks to #Kaftrio she is achieving her goal of running the #LondonMarathon DONATE in aid of @cftrust ⬇️ 2024tcslondonmarathon.enthuse.com/pf/nell-summer… #LondonMarathon2024

Blustery Sefton Coast Run Lungs 🫁 still feeling good & pace creeping back up Very happy chappy Spared you the face today 😉 @maddog10k #maddog10K #sunnysouthport #kaftrio

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Best run in weeks pace wise and 🫁 wise 10s/K faster than a week ago, same route and 20s/K faster than two weeks ago I enjoy these good days ❤️❤️ #cysticfibrosis #kaftrio

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Fantastic achievement thanks to #cysticfibrosis community 👏👏 only 72 more needed! This study will provide invaluable info about impact of #Kaftrio therapy and the potential to reduce burden of #treatment by being able to stop some of them. Great +ve strides made for PWCF

Cystic Fibrosis Trust @cftrust

3 weeks ago

Fantastic achievement thanks to #cysticfibrosis community 👏👏 only 72 more needed! This study will provide invaluable info about impact of #Kaftrio therapy and the potential to reduce burden of #treatment by being able to stop some of them. Great +ve strides made for PWCF

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The magic number 72 to complete this invaluable study #CFSTORM please share & help inform individuals with #cysticfibrosis and their families 🙏 This #research will tell us much more about the impact of #modulator therapy with #Kaftrio & help inform future care management

Lorna Allen @alloonsl

3 weeks ago

The magic number 72 to complete this invaluable study #CFSTORM please share & help inform individuals with #cysticfibrosis and their families 🙏 This #research will tell us much more about the impact of #modulator therapy with #Kaftrio & help inform future care management

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Turns out the interview I gave back in December led to an article! Only found out cos I was googling myself 😂 It’s behind a paywall sorry. Same situation as then, except Clay has now been on #kaftrio for a few months and he’s doing brilliantly on it. thetimes.co.uk/article/life-s…

‘ETI’ is a much better way of putting it than ‘#Kaftrio / #Trikafta’ like on our poster @MicrobioSoc #MicroBio24 😂 If anyone is interested, we have a poster about the transcriptional response of #Pseudomonas to these drugs.

Akos T. Kovacs @EvolvedBiofilm

4 weeks ago

‘ETI’ is a much better way of putting it than ‘#Kaftrio / #Trikafta’ like on our poster @MicrobioSoc #MicroBio24 😂 If anyone is interested, we have a poster about the transcriptional response of #Pseudomonas to these drugs.

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Pretty chuffed with a 10K run 🏃‍♂️ this lunchtime Forced myself to run to Ainsdale and the start of my nemesis the “Coast road”which I know is 5K back to my door A beautiful #sunnysouthport with day trippers streaming in as ever #cysticfibrosis #kaftrio #GoodFriday

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