Information and discussion relating to #CysticFibrosis in #Scotland.
Scotland, United Kingdom
Joined August 2018
- Tweets37
- Following110
- Followers118
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Cystic Fibrosis Scotland retweeted
Tonight, at just 17months old, our cheeky little boy, Brodie, starts kalydeco / ivacaftor. @RhonaH84 & I are utterly delighted.
@CFAware @cftrust @CF_Foundation @G551D @Kalydeco @ScotlandCF @CFQuestForCure @Butterflytrust1
Cystic Fibrosis Scotland retweeted
Back in December 2018, NHS Scotland & Vertex reached a deal on access to precision #medicines through a system called PACS Tier 2. Find out how this system works and what it could mean for people with #cysticfibrosis in #Scotland. cysticfibrosis.org.uk/news/p…
Cystic Fibrosis Scotland retweeted
UK cystic fibrosis community need support to gain access to #Orkambi #Symkevi and future precision meds. Pls sign & RT this petition: petition.parliament.uk/petit… - Thank you. @VRapley14 @SB_McAllister @ScotlandCF @RothwellCharlie @marisapreidy @FizzyoCF @crystalmmusic @JWLS_Official
Cystic Fibrosis Scotland retweeted
Beautiful Kirsty died in #Glasgow earlier on in the year 8 years after her #lung transplant & whilst waiting for a #liver #transplant due to #cysticfibrosis. Kirsty’s sister Julie pays tribute to Kirsty,& we share Kirsty’s own thanks to her donor family.
facebook.com/308381019644605…
Cystic Fibrosis Scotland retweeted
Been a busy few hours but we have to thank @JeaneF1MSP ,@scotgovhealth, @AlexNeilSNP , @jackiebmsp @alisonstrath @MilesBriggsMSP @AnasSarwar and all Cross party MSPs who gave us support. Please read full thanks here. #Orkambinow #symkevinow facebook.com/168477086617015…
Cystic Fibrosis Scotland retweeted
It is for all eligible patients for whom Orkambi and symkevi is licensed. Price has been agreed on going and not just the PACs tier 2 applications.
Cystic Fibrosis Scotland retweeted
More good news from Scotland for people with #cysticfibrosis! Thank you to @AnasSarwar who asked the #ScottishGovernment if #Orkambi could be made available in the country via the new ultra-orphan #medicine pathway. Here his PQ: ow.ly/JOIS30m5SKR. @cftrust #OrkambiNow
Cystic Fibrosis Scotland retweeted
Few hours ago @RichardlyleSnp asked the #ScottishGovernment what it has been doing to ensure #Orkambi is made available to people with #cysticfibrosis in Scotland. We really value your commitment to our access to #medicines campaign! Here his PQ: ow.ly/sGF930m4QIW @cftrust
Cystic Fibrosis Scotland retweeted
A big thank you to @RichardlyleSnp for meeting the @cftrust @lbeswickcft today to discuss access to #Orkambi and new #PrecisionMedicines for people with #cysticfibrosis in Scotland. We extremely value and welcome your ongoing support around our campaign! #Orkambinow
Cystic Fibrosis Scotland retweeted
Today @ColinSmythMSP has asked the #ScottishGovernment how many people with #cysticfibrosis have accessed #Orkambi through the #PACS Tier Two Panel. Read here his PQ: ow.ly/QuDn30m45sN. Thank you for supporting our access to #medicines campaign! @cftrust #CF #OrkambiNow
Cystic Fibrosis Scotland retweeted
What about investing in already licensed precision medicines like Orkambi first? We can be world leaders but we need investment in drugs already developed. #OrkambiNow #scotlandneedsorkambi
Cystic Fibrosis Scotland retweeted
Hoping you have #Orkambi for CF in your sights it’s available now and should be prescribed Now!
Cystic Fibrosis Scotland retweeted
What about access to the precision medicines already there, but not accessible due to pricing? People with CF are dying on a daily basis waiting for Orkambi #OrkambiNow
Cystic Fibrosis Scotland retweeted
Scotland could be 'world leader' in precision medicine. bbc.co.uk/news/uk-scotland-4…
Cystic Fibrosis Scotland retweeted
Lucas and I talking about getting Orkambi here in Australia 😊🎉
Let’s hope and keep on fighting for those in the U.K get Orkambi too!
@VertexPharma @strawfie @jilli09 @CFisNoParty50 @BenMudgePT @GreatStrides65 @ScotlandCF @nhsCFwarriormum @CFAware @CF_vs_Everest @CFNewsToday – at Gold Coast, Queensland
Cystic Fibrosis Scotland retweeted
Kirsty Harvey sadly passed away in May. She was a prominent campaigner of #organdonation in #Scotland after her lifesaving #lung #transplant which was required due to #cysticfibrosis . Watch the tribute video on our #Facebook page to Kirsty from her family.facebook.com/sharingyourwish…
Cystic Fibrosis Scotland retweeted
Great! However, it's not just orkambi the Scottish Government should be seeking a deal for. @VertexPharma have various precision medicines in the pipeline for CF & its highly important these are made available to CF patients in Scotland once they have been medically approved.
Cystic Fibrosis Scotland retweeted
I am calling for urgent action to make 'life-saving' drug, Orkambi, available to sufferers of #CysticFibrosis.
I have written to Health Sec, @JeaneF1MSP to ask what dialogue has been had with provider @VertexPharma.
Full story here: ianblackford.scot/2018/08/ia… …
