Information and discussion relating to #CysticFibrosis in #Scotland.
Scotland, United Kingdom
Joined August 2018
- Tweets37
- Following110
- Followers118
- Likes27
Pinned Tweet
Hello twitter! I have started this account to act as a #Scotland focused twitter for all matters relating to #CysticFibrosis, such as access to new medicines and general chat (maybe even a wee bit of patter here and there)!
I'd given up this account but came back on just for the fantastic news for Scotland this morning! The outstanding effort & dedication into seeing this come to fruition by @CFQuestForCure has been truly admirable, & I'm sure I speak for us all when I say a thank you is not enough!
Breaking news!!
Quest for a CF cure (the #cysticfibrosis community) are relieved and elated to announce that in #Scotland, The @scotgov and @VertexPharma have reached an agreement for the approval of universal access to #Orkambi and #Symkevi for ALL eligible patients.
Thanks must also be extended to all members of parliament involved, following the decision by the SMC I'm sure a lot of us felt that all hope was lost, so to feel that those in charge actually give a damn is a nice realisation
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.
Also I've really not been using this account as much as I'd hoped, it's a lot more time consuming than you'd expect to find relevant content so massive praise to those who do it! I'll probably only be appearing when something big has happened but I'll always keep an eye out!
Thanks to @CFQuestForCure on FB for making me aware of this, hopefully Scotland can lead the way for whole of UK until everyone who can benefit has access to these drugs! @CFAware #cysticfibrosis globalbankingandfinance.com/…
Once again I've not been very active on here recently, however the fact that this is one of the first tweets I've seen instils hope that a resolution is coming #OrkambiNow #ScotlandNeedsOrkambi
*Scotland Update* Our very own Public Affair Manager, Lynsey Beswick, gives us an update on #accesstomedicines for people with #cysticfibrosis in #Scotland. Read it over on our website: cysticfibrosis.org.uk/news/a…
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
Not had the time to be on this much recently, I don't suppose I've missed any major developments? Will try to catch up this evening!
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!