Maggieg retweeted
It is always a privilege to meet colleagues from @CFQuestForCure - @jenni_minto & I very much valued the lived experienced shared, discussing the @NICEComms @online_his MTA draft guidance & listening to your aspirations for the #CF community - we will continue to engage with you
Maggieg retweeted
Get involved. raffall.com/15171/enter-raff… – at Alexandria, Scotland
Please donate anything you can to help the CF community right across the UK. Thank you @CFQuestForCure @Diane__Murray @TraceyMillar19 @ResearchGray @BBCScotlandNews @benshephard @thismorning @NickMedhurst
Please RT our family and friends need these
@cftrust @GreatStrides65 @reallorraine @JoshLJ24 @jackiebmsp @CFQuestForCure @STVNews @Alidilly @LennoxHerald @M44GYG @WindyWilson88 @ChrisMRiches @RadioClydeNews @RFC_Charity @FoundationCFC @SMFC_CF @FcDumbarton
Maggieg 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
Has this been sent all health secs across the UK?
We stand with UKCFMA in urging @MattHancock to do everything he can to make the triple therapy available. #cysticfibrosis bit.ly/36EgIez
Maggieg retweeted
dailyrecord.co.uk/news/scott…
Article we didn’t want to share.Ayden lost his courageous battle w/ #CF. Thoughts are with those who knew Ayden. Thanks to everyone who helped. Now isn’t the time to apportion blame but to reflect sad loss of a brave wee boy. Fly high and breathe easy. ❤️
Maggieg retweeted
This boy NEEDS #trikafta NOW!!! There is little time in his side. Can someone at @scotgovhealth get onto VertexPharma to get these #lifesavingmeds4cf @alisonstrath ? 🙏🏻🙏🏻🙏🏻🙏🏻
Please help us to save our son
@JeaneF1MSP @NicolaSturgeon @ThomasCArthur @VertexPharma
@trikafta @cf
At Scottish Parliament today to say thank you to an amazing team of people. Proud to be part it. Sorry you had to miss the end of the meeting Jackie. @jackiebmsp @CFQuestForCure . @JeaneF1MSP @AnasSarwar @Marion_Super
Maggieg retweeted
I wish journos wld stop questioning parents/carers of & people with CF over the cost of #lifesavingdrugs4cf we pay our taxes! @NHSEngland shld look at the amount they waste elsewhere ie millions on paracetamol. Our loved ones can’t help that they hv most common genetic illness
Maggieg retweeted
it would not be appropriate for those in #Scotland to protest against either @VertexPharma or @scotgovhealth. We don’t want to distract those important talks that are taking place for #LifeSavingDrugss4cf. We are going to support other UK countries by sharing on social media
I’ll be on @BBCRadioScot just after 7am Monday 12th August talking about CF and the impending decision from the SMC re universal access for all in Scotland for Orkambi and Symkevi. @CFQuestForCure @OrkambiNow @strawfie
Maggieg retweeted
Spinraza can make a huge difference to the lives of people with Spinal Muscular Atrophy (SMA). Delighted to see the positive affect it has had for Zac and his family. For more information on the Spinraza campaign visit musculardystrophyuk.org/camp…
It’s been six weeks since @NICEcomms met to consider #Spinraza, an #SMA drug that has been life-changing for Zac. But this drug is still unavailable in England. Families are crying out for it and continued delays are causing them anguish >> bit.ly/2VMGvfX #EveryDayCounts
Maggieg retweeted
Bonhill woman determined to return to charity after cystic fibrosis breakthrough dailyrecord.co.uk/news/local…
Maggieg retweeted
News that Vertex have destroyed nearly 8,000 packs of Orkambi is shocking. People are dying while waiting for access to these life-saving medicines. We demand that @VertexPharma ,@NHSEngland & @NICEcomms conclude their talks so people with #cysticfibrosis get #lifesavingdrugsnow.
Maggieg retweeted
#OrkambiNow #SymkeviNow @alisonstrath @JeaneF1MSP @AlexNeilSNP @jackiebmsp why are we, in Scotland still waiting for PACS tier 2 decisions? People with CF are dying!! What is going on now? What’s the delay?