Cystic Fibrosis Charity raising awareness and funds to support research. 100% of donations currently go to UK CF Gene Therapy Consortium
West Dunbartonshire, Scotland
Joined February 2015
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- Following229
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FlutterbyFUNdraisers retweeted
If you need beds freed up @MattHancock why not follow the devolved nations lead and allow England to follow FDA licensing for Kaftrio 1,000s more wld be eligible you are failing CF patients in the pandemic its #inequality #EnglandNeedsKaftrio4All #KaftrioEqualityUK
FlutterbyFUNdraisers retweeted
Guys I need some help for an upcoming YouTube video for CF week! This applies to anyone who has #cysticfibrosis or has a kid with CF or a partner with CF! I am looking for a short video (5-20seconds) telling me a small fact about your life with CF... (1/3)
@CFAware @cftrust
FlutterbyFUNdraisers retweeted
👇👇#staysafe this is excellent advice 👇👇
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FlutterbyFUNdraisers retweeted
The NHS is open…👇🏼
FlutterbyFUNdraisers retweeted
Many thanks to colleagues from the @online_his Evidence Directorate & the Scottish Medicines Consortium for such a productive meeting with @JeaneF1MSP today to discuss #HTA #PrecisionMedicine #clinicaluncertainties #PatientExperience & potential impacts of #Brexit – at Glenrothes, Scotland
FlutterbyFUNdraisers retweeted
Delighted to announce strong @scotgov support for Precision Medicine in Scotland. This is a key area to boost health outcomes, strengthen research and boost the economy. An excellent collaboration.
Today in Perth @JohnSwinney has just announced £9.5m for @PrecisionMedSco. Great news for the NHS Scotland, patients and Scotland’s precision medicine industry #Precisionmedicine #ScotInnovatation
FlutterbyFUNdraisers retweeted
Kelli Gallacher paid tribute to @jackiebmsp for backing her fight ahead of an awards ceremony in which the politician is nominated in two categories @Flutterby4CF
dailyrecord.co.uk/news/local…
FlutterbyFUNdraisers retweeted
#Bonhill fundraisers continue to campaign despite cystic fibrosis breakthrough @Flutterby4CF dailyrecord.co.uk/news/local…
FlutterbyFUNdraisers retweeted
Today is a good day in our fight for #lifesavingdrugsnow Thank you to all who have worked so hard to make it happen in Scotland and we know the fight goes on!
FlutterbyFUNdraisers retweeted
#Bonhill mum's determination to continue fight for life-changing drug @Flutterby4CF @jackiebmsp dailyrecord.co.uk/news/local…
FlutterbyFUNdraisers retweeted
Eight thousand packs of a medicine used to treat people suffering from cystic fibrosis have been destroyed because they were out of date.
Campaigners in the South are fighting for the drug #Orkambi to be made available on the NHS.
More here: bit.ly/2WzMlBv
FlutterbyFUNdraisers retweeted
Well done Kelli, you have been very brave spearheading the campaign for Orkambi. And a million thanks to the @Daily_Record and @VivienneAitken you stuck with it and cystic fibrosis patients will now have access to life-saving drugs on NHS dailyrecord.co.uk/news/scott…
FlutterbyFUNdraisers retweeted
Come on @VertexPharma it’s almost Christmas and I haven’t heard whether you are going to resubmit Orkambi or it’s successor drug, Symkevi, to the SMC. Cystic Fibrosis sufferers need the drugs now and what a great Christmas present that would be #orkambinow #cysticfibrosis
FlutterbyFUNdraisers retweeted
Cystic Fibrosis sufferers need access to Orkambi and the next generation of medicines @VertexPharma need to resubmit to the Scottish Medicines Consortium urgently @JeaneF1MSP @AlexNeilSNP @MilesBriggsMSP @AnasSarwar
FlutterbyFUNdraisers retweeted
The ‘thanks’ genuinely fall to you & the rest of the #cysticfibrosis community for your humbling stories & honest reflections & ensuring the meeting was so positive. In return we will continue to do all we can do to make progress on access to #CFTR medicines – at Edinburgh, Scotland
FlutterbyFUNdraisers retweeted
Cystic fibrosis sufferer says docs want to give her life-saving drugs but can't afford it - Daily Record dailyrecord.co.uk/news/scott…
FlutterbyFUNdraisers retweeted
Flutterby Fundraisers hold the party every year to support CF gene therapy research. dailyrecord.co.uk/news/local…
FlutterbyFUNdraisers retweeted
So @MattHancock Tell me again how it would not be appropriate for you to intervene in the matter between the parties.. it clearly say’s otherwise in your job description 🤔 the CF community are also sorry you cannot be more directly helpful! #DoTheRightThing #OrkambiNow
FlutterbyFUNdraisers retweeted
@NicolaSturgeon while you are visiting Glasgow Uni do you want to come over to the chemistry building to explain to me why my child is being denied life saving medication?#scotlandneedsorkambi #OrkambiNow
