#UK CF campaigner Sharon

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#UK CF campaigner Sharon banner
#UK CF campaigner Sharon

#UK CF campaigner Sharon

@CFno1LeftBehind

🇺🇦#Ukraine 🇬🇧#UK 💊 #Kaftrio 💙 #NHS #cysticFibrosis #genetherapy 🧬 Let’s find a “cure” for CF 💛 #noOneLeftBehind 💛💛@cftrust💛supporter

Surrey, England, UK, Europe. 가입일 Ekim 2010
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#UK CF campaigner Sharon
#UK CF campaigner Sharon@CFno1LeftBehind·
.@MattHancock Thanks for helping 👏🏻👏🏻 @ChrisMRiches #ourCFSuperHero🤩 @jess_cranfield can’t wait to start #kaftrio from @NHSEngland & @VertexPharma She can now live with CF not die from it She’ll be able to breathe for #1000years @MarcCotterill Next the cure & 10% @cftrust
#UK CF campaigner Sharon tweet media
#UK CF campaigner Sharon@CFno1LeftBehind

.@cftrust Look @MattHancock says he’s going to help us fight for #TrikaftaNext We hope you can help We need to meet with @VertexPharma to get them to agree to engage with @NHSEngland for an interim/managed access deal in May 2020 when licensed by EMA @ChrisMRiches @NickMedhurst

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#UK CF campaigner Sharon
#UK CF campaigner Sharon@CFno1LeftBehind·
NHS hope as new miracle drug greatly reduces some cystic fibrosis symptoms express.co.uk/news/uk/202765…
#UK CF campaigner Sharon@CFno1LeftBehind

A fantastic headline for #StPatricksDay Let’s hope for a bit of Irish luck ☘️ that this latest @VertexPharma #cysticfibrosis drug gets approved by @NICEComms & is available on @NHSuk It’s still NOT yet that illusive cure but certainly is an even better CF drug🤞🏻 @ChrisMRiches

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#UK CF campaigner Sharon
#UK CF campaigner Sharon@CFno1LeftBehind·
@SkyHelpTeam I’m requesting the free VIP night in. I don’t care ifs it a rental or not. This was your (sky) offer to me via the “mysky@ app because I’m a vip diamond member. ??
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Sky Help Team
Sky Help Team@SkyHelpTeam·
@CFno1LeftBehind Thanks for that Sharon. Just to check as it's not clear on the screenshot of your TV, is this the rental version that you are requesting?
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#UK CF campaigner Sharon
#UK CF campaigner Sharon@CFno1LeftBehind·
Hello @SkyHelpTeam I was looking forward to my SKY VIP rewards movie night in lbut despite following your instructions on my Sky app, my Sky Q box wouldn’t allow me to watch this movie assuming I didn’t have enough credit on sky store 🤷‍♀️You said it was a FREE gift🎁🎥😡 Dm sent
#UK CF campaigner Sharon tweet media#UK CF campaigner Sharon tweet media#UK CF campaigner Sharon tweet media#UK CF campaigner Sharon tweet media
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#UK CF campaigner Sharon
#UK CF campaigner Sharon@CFno1LeftBehind·
@BenOxlade1 PTSD is still a thing for me (& my daughter) when her fev1 plummeted to below 30% when she was a teenager & realistically the whole family too! Be kind to yourself. Take time to find joy in the little things The future is so bright for CF these days, especially for kids today 💛
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Ben Oxlade-Parker
Ben Oxlade-Parker@BenOxlade1·
Two years ago today Rufus was admitted to BRI hospital. A rough 10 days, with a lot of heated discussions, as we fought to ensure Rufus had what he needed. Luckily, he's not been readmitted since and has gone from strength to strength. Unfortunately, we still bear the scars.
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David Turner (gs65 on B S k y)
David Turner (gs65 on B S k y)@GreatStrides65·
I am delighted that Laura instantly "liked" my post about UK defence spending, and that all my other posts are equally - and as immediately - pleasing to lots of others who joined @X at about the same time as, and with similarly active timelines to, Laura #CullTheBots @elonmusk
David Turner (gs65 on B S k y) tweet media
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#UK CF campaigner Sharon
#UK CF campaigner Sharon@CFno1LeftBehind·
This is so unprofessional @haart_uk My beautiful daughter deserves to live in safe living conditions without all this mould 🦠 which is life threatening for someone with CF 🧬 You have a responsibility to sort this out Shame on you! @ChrisMRiches @cftrust @Daily_Express
Jess@jess_cranfield

As a person living with #cysticfibrosis it’s totally unacceptable that @haart_uk have left me living in horrific conditions despite trying to rectify for months. It’s putting my life and health as well as my housemates health at risk. it’s absolutely unacceptable

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#UK CF campaigner Sharon 리트윗함
#UK CF campaigner Sharon
#UK CF campaigner Sharon@CFno1LeftBehind·
Wow….In the USA, a new @VertexPharma triple, once daily💊 “(vanzacaftor/tezacaftor/deutivacaftor), a once-daily next-in-class triple combination #cysticfibrosis ” Interesting news for 🇺🇸 patients & hopefully in Europe soon… @cftrust @ChrisMRiches news.vrtx.com/news-releases/…
#UK CF campaigner Sharon tweet media
Vertex Pharmaceuticals@VertexPharma

#Breaking: The U.S. FDA approves a label extension for #CysticFibrosis. We are excited to make this treatment available to more eligible patients. Learn more: vrtx.com

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탐색

@jilli09 @GreatStrides65 @kyliem @TheRangeUK @X @TheRanges_UK @Ryanair @VertexPharma