Rachel cole @RacheyCole
CFMum fighting for LUCIESLIFEUNLIMITED Joined September 2014-
Tweets1K
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Followers196
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Following152
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Likes4K
Wow- this is incredible. What an inspirational lady 👏🏻👏🏻
Wow- this is incredible. What an inspirational lady 👏🏻👏🏻
▶️Three weeks until petition closes ▶️No recent updates ▶️Sign/share for the next generation of #cysticfibrosis patients #NoOneLeftBehind petition.parliament.uk/petitions/6506… @CFAware @VarnalsVintage @RacheyCole @liammchugh1961 @InfamousGreggyG @myCFHero @CFcarer @evergreennebs
Good to see an article about the Right To Breathe campaign with @VertexSaveUs co-founder @gayle_pledger in @cftrust magazine #CFLife Fascinating read about how a grass roots organisation is making change happen for CF patients around the world Read here: cysticfibrosis.org.uk/the-work-we-do…
Twenty nine doctors on four continents challenge @VertexPharma for their ‘scandalous’ drug pricing. The global #cysticfibrosis community is fighting back. 💊🌍 Well said @DrMeghanMcGarry 👏👏👏 #RightToBreathe #NoOneLeftBehind bostonglobe.com/2024/04/11/bus…
#cysticfibrosis @cftrust @CF_Foundation @CFCanada @AMFQMX @mecfassoc @FibrosisQuistic @AFQMALAGA @fqasturias @CFAware @CFCalgary @cf_care @liammchugh1961 @RacheyCole @CFcarer @kifder @Rida_ZA @JoleneinAfrica @TanyaKoorts @vihaan_cfindia @DMoKreis @DrMeghanMcGarry @OlgaGurgula
PLEASE SIGN and share this petition to ensure access to life changing drugs for younger children 🙏🏻
PLEASE SIGN and share this petition to ensure access to life changing drugs for younger children 🙏🏻
Great to meet with the Welsh First Minister yesterday to discuss CF care and innovation and to emphasise the importance of removing any uncertainty about access to life-changing medicines for all those who could benefit in the future as soon as possible.
Please sign this petition and share it’s crucial that everyone with #cysticfibrosis gets access to modulator drugs
Please sign this petition and share it’s crucial that everyone with #cysticfibrosis gets access to modulator drugs
Now we just need @NICEComms to announce next month their approval of @VertexPharma range of #cysticfibrosis drugs for all future patients - so we won't end up with two-tier health system of current patients on life-saving drugs but newborns facing growing up without them.
Now we just need @NICEComms to announce next month their approval of @VertexPharma range of #cysticfibrosis drugs for all future patients - so we won't end up with two-tier health system of current patients on life-saving drugs but newborns facing growing up without them.
The MHRA has approved Kaftrio and Kalydeco on the NHS for two to five years old gov.uk/government/new… #cysticfibrosis #kaftrio @CFAW
Share on Twitter express.co.uk/life-style/hea… There is understandable uncertainty for families at the moment. Let us hope @NICEComms @NHSEngland @VertexPharma can complete their processes and provide permanent positive clarity for families with #cysticfibrosis @cftrust @Daily_Express
I cannot believe we are back here!!! Absolutely heart breaking 💔 #cysticfibrosis Kaftrio has been life changing for my son!! @KarlTurnerMP
I cannot believe we are back here!!! Absolutely heart breaking 💔 #cysticfibrosis Kaftrio has been life changing for my son!! @KarlTurnerMP
‘It's just unthinkable that they can take these children's lives away from them, when there is a drug that can stop it’ bbc.in/4746y79
This is heartbreaking guidance issued by NICE. I’ve submitted my comments please make sure you do the same. All people with #cysticfibrosis should have the same access to #lifesavingcfdrugs.
This is heartbreaking guidance issued by NICE. I’ve submitted my comments please make sure you do the same. All people with #cysticfibrosis should have the same access to #lifesavingcfdrugs.
Come on @DHSCgovuk @DHSCmedia @SteveBarclay @RishiSunak @NHSEngland listen to @cftrust and families and give free prescriptions to #cysticfibrosis sufferers. @Daily_Express @ZanzibarSmith
Come on @DHSCgovuk @DHSCmedia @SteveBarclay @RishiSunak @NHSEngland listen to @cftrust and families and give free prescriptions to #cysticfibrosis sufferers. @Daily_Express @ZanzibarSmith
RAF heroes’ epic hike to demand free prescriptions for patients with #CysticFibrosis To support Nick & @cftrust visit justgiving.com/fundraising/tr… Write to your MP, ask them to support this cause & tell them about the petition handed in this weekend READ: express.co.uk/news/uk/181139…
Hi @ollymurs - Imagine having to take this many medicines/supplements/nebulisers to stay alive. Then imagine being made to pay for the prescriptions Free prescriptions for all #cysticfibrosis patients PETITION: petition.parliament.uk/petitions/6337… Please sign and RT 🙏#health #cfaware
Ongoing chronic illness can affect the ability to earn money - including if your child needs hospitalisation or home care that affects your work Prescriptions should be free for all #cysticfibrosis patients Pls sign & SHARE petition ⬇️ petition.parliament.uk/petitions/6337… @ZanzibarSmith
Signatures and RTs appreciated 🙏💛 PETITION ⬇️ petition.parliament.uk/petitions/6337… @menzi_dla @SurreySAR @KarinKMacDee #boost4charity @SupportUKtoday @CharityHourUK #cysticfibrosis #SundayMotivation
Signatures and RTs appreciated 🙏💛 PETITION ⬇️ petition.parliament.uk/petitions/6337… @menzi_dla @SurreySAR @KarinKMacDee #boost4charity @SupportUKtoday @CharityHourUK #cysticfibrosis #SundayMotivation
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3K Followers 436 Following All landlords and agents in Wales must be registered and licensed through Rent Smart Wales. Siarad Cymraeg? Dilynwch @RhentuDoethCym
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Good to see an article about the Right To Breathe campaign with @VertexSaveUs co-founder @gayle_pledger in @cftrust magazine #CFLife Fascinating read about how a grass roots organisation is making change happen for CF patients around the world Read here: cysticfibrosis.org.uk/the-work-we-do…
Twenty nine doctors on four continents challenge @VertexPharma for their ‘scandalous’ drug pricing. The global #cysticfibrosis community is fighting back. 💊🌍 Well said @DrMeghanMcGarry 👏👏👏 #RightToBreathe #NoOneLeftBehind bostonglobe.com/2024/04/11/bus…
What’s that you say? Lung function is improving!! 😮💨🎉. A combination of Kaftrio, high calorie diet and this! Physio now includes a regular workout, rather than sedentary airway clearance. In your face #CF #fightingfit #cysticfibrosis
The CHAT team have had a wonderful week in the primary schools getting to know some of our incoming year 7s, playing games and answering lots of questions. We are really looking forward to seeing them all again for their transition week in July!
The legend that is @liammchugh1961 is going again in the #londonmarathon2024 in aid of @cftrust Sponsor here: justgiving.com/page/liam-mc-h… 💛💛💛💛 #cysticfibrosis #cfawareness #cfaware #running
Congratulations to Lauren McKenzie and Martha Appleby on their selection for the U14 Welsh Schools football squad! 🏴⚽️ An incredible accomplishment indeed! #WomensInternationalDay #WalesFootball
Congratulations to Oliver in Year 10 on representing Wales in football at U15 level during the half term break. He gained his first caps in a tournament held in Ireland.
Mum Becky Whitfield's proud legacy for her brave cystic fibrosis daughter Elle express.co.uk/news/uk/186558…
Ever sat in a stuffy hospital next to someone coughing constantly? It would be nice to have the reassurance of good ventilation and air filtration right? ⬇️ petition.parliament.uk/petitions/6545… Pls sign & RT @baldypidge @zerocovidni @hazardscampaign @SammieFMc @HelenMMGoss @gailyloulabell
Thankyou Edinburgh for an amazing weekend
Great to meet with the Welsh First Minister yesterday to discuss CF care and innovation and to emphasise the importance of removing any uncertainty about access to life-changing medicines for all those who could benefit in the future as soon as possible.
Now we just need @NICEComms to announce next month their approval of @VertexPharma range of #cysticfibrosis drugs for all future patients - so we won't end up with two-tier health system of current patients on life-saving drugs but newborns facing growing up without them.
📢 We've extended the licences for Kaftrio (ivacaftor, tezacaftor and elexacaftor) with Kalydeco (ivacaftor) to children aged 2 to 5 with cystic fibrosis. Find out more 👉 bit.ly/3QwOLhS
Wonderful news today for families of youngsters with #cysticfibrosis as @MHRAgovuk approve wonder drug #kaftrio for children aged two up to six, meaning hundreds of new patients in UK can look forward to lives unlimited by the genetic condition. @Daily_Express @cftrust
📢 We've extended the licences for Kaftrio (ivacaftor, tezacaftor and elexacaftor) with Kalydeco (ivacaftor) to children aged 2 to 5 with cystic fibrosis. Find out more 👉 bit.ly/3QwOLhS
At 10.58am today we observed a #TwoMinuteSilence in honour of #RemembanceDay. Thank you to Esther in Yr 12 for playing the Last Post. #LestWeForget
Heartfelt thanks to the #Donor & #DonorFamily who together gave my young daughter #TheGiftOfLife. Please will YOU help others in her desperate situation? Over 7,000 terminally ill waiting in UK. #OrganDonationWeek #OrganDonation #Liver #Transplant @share_wishes @LiveLifeGiveLi1
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