We're dedicated to uniting for a #lifeunlimited for those living with #cysticfibrosis. Our social & Helpline teams monitor our accounts between 9-5 weekdays.
United Kingdom
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It's #HelplinesAwarenessDay, a great opportunity to remind you that for anyone looking for information or support with any aspect of #cysticfibrosis, our friendly Helpline team are here for you. ☎️
Plus, you can now reach us via WhatsApp!
ALT Chat with our Helpline. Call 0300 373 1000, Monday–Friday 10am–4pm. Email: helpline@cysticfibrosis.org.uk. Chat with us on Facebook, Twitter or Instagram. Message us on WhatsApp on 07361 582053.
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A deal has been done. Finally, people with #cysticfibrosis living in England will have access to #Orkambi and #Symkevi. We thank the community for their support and campaigning to get access to #LifeSavingDrugsNow! More to follow
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When @BenOxlade1 started documenting the birth of his son Rufus on Twitter back in July, he could never have imagined how his family’s story would capture the hearts and minds of people from all over the world. (1/4)
❄️ bit.ly/3gU4wld
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Remember Tim, who we've been following on his #LondonMarathon journey? Well he just made it extra-special 💍
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The end of an amazing day for everyone eligible for Orkambi & Symkevi in England as we celebrate access finally arriving. It’s been 4 years of dedication and commitment from everyone in the CF community, but the fight continues until everyone can benefit from #LifeSavingDrugsNow
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It’s a week until Wear Yellow Day and the perfect weekend to buy something bright and bold for your #CFYelfie. Don’t take our word for it, we’ve a got a different kind of doctor to help remind you all!
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"My advice to other disabled people would be, concentrate on things your disability doesn't prevent you doing well and don't regret the things it interferes with. Don't be disabled in spirit as well as physically." Prof. Stephen Hawking, seen here with @CF_vs_Everest
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NHS England has announced a deal for access to the life-saving drug #Kaftrio, called #Trikafta in the US, on the day it receives its European licence, bringing hope to thousands across the UK. Read our news story here: bit.ly/3eNlqLV #cysticfibrosis
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BREAKTHROUGH: Deal to be announced today on access to Orkambi, Symkevi and other #LifeSavingDrugsNow for people with #cysticfibrosis in #Scotland. More details to follow after formal announcement.
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We are delighted too @MattHancock, and we pay tribute to the #cysticfibrosis community and everyone who fights for access to #LifeSavingDrugsNow across the UK
We're delighted to announce that @VertexPharma and @NHSEngland have reached an agreement on Orkambi and other cystic fibrosis drugs.
🔽 Watch Health Secretary @MattHancock share his views on this fantastic news.
@cftrust | @Daily_Express | #CysticFibrosis | #Orkambi
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We’ve written to all major supermarkets to tell them that people with cystic fibrosis need their help, right now, to get the food and basic essentials they need. Read the letter here: cysticfibrosis.org.uk/the-wo… #cysticfibrosis #cfandcoronavirus
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Breaking news for the #cysticfibrosis community.
Simon Stevens closes the session by telling the Committee that this morning @NHSEngland has signed a commercial agreement with @VertexPharma to make available its triple therapy for cystic fibrosis patients--on the very day it receives its European licence
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Today, NICE have given approval for the life-changing #cysticfibrosis modulator drugs to be made available on the NHS in England. This follows many years of campaigning by Cystic Fibrosis Trust and people right across the CF community.
ow.ly/XGMs50SmgJR
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People with cystic fibrosis in Northern Ireland will get access #LifeSavingDrugsNow with deal on its way to fund Orkambi and Symkevi. More details as we get them.
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Thanks to @OneRepublic and Bryan Warnecke helping to raise awareness and money for CF with the new single #ILived. vevo.ly/RjrPwB.
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We know shielding has been incredibly hard for lots of people with #cysticfibrosis and their families, so it was lovely to see Prince William,@KensingtonRoyal, surprise video call Kaydyn and his mum Leanne on @BBCTheOneShow: bbc.co.uk/programmes/b007tcw… (1/2)
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"This will truly save lives", our Chief Executive David Ramsden on today's news for the #cysticfibrosis community.
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We can now confirm all four UK nations have access to #Orkambi and #Symkevi. A four-year long fight has finally ended and we thank the #cysticfibrosis community for their hard work.
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David Ramsden, Chief Executive at the Cystic Fibrosis Trust, said: "Today the MHRA and European Commission has agreed to license #Kaftrio for use in children aged 6- 11 years old." (1/3)
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Scotland has announced a deal for access to the life-saving drug #Kaftrio, called #Trikafta in the US, on the day it receives its European licence. Read our news story here: bit.ly/3gt49Zs
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Did you see New Year's Eve's episode of Pointless Celebrities? Comedian Tim Key won £1375 for Cystic Fibrosis Trust! Huge welldone for your efforts on the show, and thank you for choosing our charity! @timkeyperson #pointless
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As Jodie Whittaker says, don't forget to wear yellow tomorrow. Join in and share you #CFyelfie with us and text YELLOW to 70500 to donate £5 to help us fight #cysticfibrosis. Visit cysticfibrosis.org.uk/yellow for more info #IHateYellow
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The weather has held out for the Dulwich Park Fun Runs today ☀️Great to have Fenellea Woolgar, Jenny Agutter and Jennifer Kirby from Call The Midwife here supporting our runners!
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And the 100k mark is passed. A huge congratulations and thanks to all of those in the commuity who not only started this #OrkambiNow petion but have driven it to great success in such a rapid speed petition.parliament.uk/petit…
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Today we are calling on Prime Minister @theresa_may to ensure access to #OrkambiNow and other #LifeSavingDrugsNow for all with #cysticfibrosis who are eligible. Retweet this video and help join the fight
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This is a critical step on the road to ensuring that the Vertex triple therapy is licensed for all who would benefit from it and available on the NHS without delay.
We will not stop until life-saving drugs are available for everyone with cystic fibrosis in the UK.
‼️ EMA recommended granting a marketing authorisation in the 🇪🇺 for Kaftrio, the first triple combination therapy for the treatment of #cysticfibrosis in #patients aged 12 years and older: ema.europa.eu/en/news/new-me…
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Great letter from John Stewart, National Director @NHSEngland. This deal has been made possible by the hard-fought battle for Orkambi and Symkevi, and our ability to closely monitor interim access for CF therapies using the Cystic Fibrosis Trust’s UK CF Registry.
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This #Thanksgiving we want to thank the NHS. Over the past 71 years people with #cysticfibrosis have had a lot of contact with the #NHS and the work they do is incredible and invaluable to the CF community.
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Breaking news! People with #cysticfibrosis in Wales will get access to #LifeSavingDrugsNow with deal agreed for access to #Orkambi and #Symkevi as well as continued access to #Kalydeco. Updates to follow!
Delighted to have agreed in principle terms for patients in Wales to access @VertexPharma cystic fibrosis medicines. I expect detailed agreement to be concluded by end of November to allow highest priority patients to begin treatment.
ow.ly/wJAB50x9CUm
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Last week those at #ECFS2019 were awed by the Cystic Fibrosis Virtual Choir and Thomas Oakley, a dancer with CF. Now, thanks to Marcus Wackwitz and the team from @KITGroupBerlin, we can share this with you all.
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Huge congratulations to the CF community and their determination - access to Orkambi for people with cystic fibrosis will be debated in parliament. Likely to be March but date to follow #OrkambiNow
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Wales has announced a deal for access to the life-saving drug #Kaftrio, called #Trikafta in the US, on the day it receives its European licence. Read our news story here: cysticfibrosis.org.uk/news/w… #cysticfibrosis
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Amazing scene down at mile 24 of #LondonMarathon for #TeamCF! We are so happy she said yes Jon! #cysticfibrosis
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Confirmed! @CF_vs_Everest did it! Nick Talbot becomes first person with #cysticfibrosis to reach summitt of #Everest
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Cystic fibrosis patients get access to life-changing drugs on the NHS mol.im/a/13551677 via @MailOnline
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“Having him home is amazing and means we can all move onto the next stage of our lives as a family of four. Henry was over the moon that his little brother was finally home. They have since become the best of playmates and Henry constantly says, ‘Henry happy, Rufus happy’.” (3/4)
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Last week we delivered over 1,000 signed prescriptions from the CF community to @10DowningStreet, calling on the Prime Minister to urgently review the outdated prescription charges exemption list.
Here we share a little behind the scenes look at the day!
@RishiSunak @Jeremy_Hunt
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None of what has been achieved in fight for access to #LifeSavingDrugsNow would be possible without the #cysticfibrosis community. @DavidRamCFT says thank you to everyone who has made today's news possible. We remain committed to achieving access in Wales & Northern Ireland.
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Today we have joined forces with charities urging the government to give further guidance for people shielding due to health conditions.
People with CF haven’t left their homes for nearly 12 weeks now & need assurances on what their lives will look like in the next few weeks. 1/3
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“Throughout my life I’ve been asked “you don’t look sick?” “I’m holding up an X-ray to show the damage my CF causes to my lungs. Even though I’m smiling living with #cysticfibrosis is a battle.”Ever been asked you don’t look like you have a disability?#InvisibleDisabilitiesWeek.
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Today's news on #LifeSavingDrugsNow has been four years in the making. Find out more about how people with #cysticfibrosis in England will benefit from access to #Orkambi & #Symkevi as we continue to fight for those in Wales & Northern Ireland cysticfibrosis.org.uk/news/a…
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A massive congratulations to @liammchugh1961 for winning the @PrideOfBritain Fundraiser of the year Award 2020 for Northern Ireland announced on @UTVNews. Liam is a fantastic fundraiser and campaigner for people with #cysticfibrosis and we couldn’t be happier for him!
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Seriously, we are humbled to see so many MPs, including former cabinet minsters like Iain Duncan Smith, in Westminster Hall for the #OrkambiNow debate and helping bring attention to #cysticfibrosis and #Orkambi
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Sir David Amess MP had been a long and valued friend to the CF community, especially championing access to Orkambi and Kaftrio.
We were saddened to hear news of his death and offer our deepest condolences to his family for their loss at this difficult time.
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We were very saddened to hear of the death of Victoria Temlett over the weekend. Tor worked with us on multiple projects around transplants and research for people with CF & cancer. She was a much loved member of the CF community and our thoughts are with her family and friends.
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Hear from David Ramsden about the deal secured today in England - of course our work wont stop until everyone across the UK has access to life saving drugs.
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When Vertex’s triple therapy #Kaftrio gets its full license in the coming weeks, people in England will be among some of the very first in Europe to get access to it.
We have always, and will always, fight for a life unlimited for those living with cystic fibrosis. (2/2)
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Thank you to @ashfield_lee for raising his #Trikafta question in Parliament today. We're grateful to see MP's get behind the fight for #LifeSavingDrugsNow.
You can watch the clip here (13:23:21): bit.ly/2Bewt1R
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"Because people with #cysticfibrosis don’t always look “ill” having the condition can make you feel a bit invisible." For #InvisibleDisabilitiesWeek, we've asked our #YouthAdvisoryGroup for the most annoying things about living with an #invisiblecondition cysticfibrosis.org.uk/news/s…
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Big thanks to @BBCBreakfast for covering access to #Orkambi for those living with #cysticfibrosis this morning ahead of the #OrkambiNow debate in Westminster this afternoon
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We are incredibly proud to have worked alongside the #cysticfibrosis community in the long campaign for life-saving medicines.
The four-year battle to secure access to Orkambi was a critical step and remains the only medicine suitable for many children. (1/2)
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Labour Leader @jeremycorbyn addressed #cysticfibrosis drugs crisis in Conference speech. Important that #CF is part of national conversation. @cftrust will continue to fight for immediate access & a system that ensures the best treatments are available for all in years ahead
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Fantastic to see Kate's #Kaftrio story on @itvnews this evening! In case you missed it, you can find out more below now.
itv.com/news/2022-02-08/girl…
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Great to have @4JennyAgutter , her niece Georgina, great-nephew Albie and @DrRanj talking about #cysticfibrosis and access to #LifeSavingDrugsNow on @thismorning
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London Marathon was only the start for Sophie, today she is running her 3rd of 36 marathons in 36 days! 💛
Find out more ➡️ bit.ly/44eaVfb
Sophie Grace Holmes has cystic fibrosis and is running 36 marathons in 36 days. bbc.in/3JtlDoF
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All of us at Cystic Fibrosis Trust want to wish our celebrity ambassador Jenny Agutter a happy birthday! Jenny carries the #cysticfibrosis gene. Her niece & great-nephew have CF. She knows the full impact of CF & her passion for our work is vital in uniting for a life unlimited.
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The fight for Orkambi has taken another step forward @theresa_may is “keen to see a speedy resolution” about the #Vertex & #NHS negotiations. Teresa Pearce raised this issue at PMQ's, quoting from one of the 1,000 letters for #OrkambiNow to be handed in to #DowningStreet later.
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EMA has confirmed to us that it decided in Oct that @VertexPharma triple therapy for #cysticfibrosis (#Trikafta in US) will be reviewed under accelerated assessment. It will be fast-tracked to reach a decision sooner, typically in 7/8 mths, instead of the usual 1 year.
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Around 1000 children w/ #cysticfibrosis & families have written to @theresa_may to ask Govt to act for #OrkambiNow. Today, campaigner @fight4orkambi & her daughter Ivy handed them in to @10DowningStreet w/ Public Affairs Officer, @gtpaget and Gemma & Ivy's local MP @PennyMordaunt
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We have a very exciting announcement!
Our #ClinicalTrials Accelerator Platform has received a £2.1 million funding boost from @CF_Foundation to help expand access to trials and accelerate the development of new treatments. Read more here: ow.ly/HUqz50xroNJ
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We have been working hard to stress to all relevant bodies the importance of the triple combination therapy, known as #Trikafta, for people with #cysticfibrosis during this time. Hear from our Chief Executive, David Ramsden, on what we have done.
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We stand with UKCFMA in urging @MattHancock to do everything he can to make the triple therapy available. #cysticfibrosis bit.ly/36EgIez
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Over a minute of pure #Dance4CF joy! Thank you @StephenMcGann for showing us just how its done 💛
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Today the Committee for Medical Products for Human Use (CHMP) have given consent for the next step in extending the rollout of #Kaftrio for 6-11 year olds. (1/2)
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We chatted to Ben and his family over on our blog about the supportive community they’ve found on social media, the moment they got to bring Rufus home after 12 long weeks in hospital, and their hopes for their little boy’s future. (2/4)
⭐️ bit.ly/3gU4wld
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This Christmas, will you give children with CF like Rufus the gift of effective treatments for all?
When we join together, amazing things happen. 💛
(4/4)
cysticfibrosis.org.uk/donate
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You don’t see CF…
Today we are thrilled to launch our new awareness campaign, continuing our previous #CFTruths work, featuring Kieron.
You'll be able to spot him on billboards around the UK from today, so keep your eyes peeled!
Find out more ➡️ ow.ly/SWE450NQF2M
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The MHRA has today extended the licence of the CF drug Kaftrio, saying it is safe and effective for eligible children over 2 years old. (1/6)
➡️ ow.ly/5YHS50Q7RNP
ALT The MHRA has today extended the licence of the CF drug Kaftrio, saying it is safe and effective for eligible children over 2 years old. This approval is separate to the ongoing NICE appraisal process but NHS England have confirmed that all eligible children can be confident about their long-term access to these treatments.
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Our favourite thing about 280 characters on Twitter now is how we can talk about Pseudomonas aeruginosa, non-tuberculosis mycobacterium abscessus and all other such long cystic fibrosis-related Latin terms without having to commit our usual crimes against grammar and punctuation
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Our Chief Executive, David Ramsden, shares his perspective following NICE's announcement on Friday.
You can submit your feedback to the NICE consultation today.
➡️ ow.ly/wUfO50Q55kK
You can also read our updated FAQs on our website now.
➡️ ow.ly/PeJ650Q55ou
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We’re pleased that @VertexPharma and the UK Government are likely to start talking again. People with #cysticfibrosis should not be made to wait any longer for access to life-changing drugs express.co.uk/news/uk/108697…
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Six weeks ago our colleague & friend Kayleigh Old died while waiting for a double lung transplant. As part of #CFWeek here is her story. (Warning: You may find this video distressing. If you're affected by this you can find our resources & support at cysticfibrosis.org.uk/bereav…)
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If you're seeing #FiveFeetApart (or some select other films) this weekend, look out for our cinema advert being shown in some screenings
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Very pleased find out after waiting for over 3 years, Charles Michael Duke has received double lung transplant.
Many of you will know Charles from the work he has done with us and for organ donation campaigning: bit.ly/2LUVW1n
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Today we delivered over 1,000 signed prescriptions from the CF community to @10DowningStreet, calling on the Prime Minister to urgently review the outdated prescription charges exemption list, drawn up in the late 1960s.
ALT Chief Executive, David Ramsden, stands outside 10 Downing Street with a box of signed prescriptions from the CF community.
ALT Three staff members from Cystic Fibrosis Trust hold up some of the signed prescriptions.
ALT The box of over 1,000 signed prescriptions from the CF community, featuring messages from people with cystic fibrosis explaining the impact having to pay for their daily medicines has on their lives.
ALT Chief Executive, David Ramsden (center) standing outside Downing Street with four other members of Cystic Fibrosis Trust staff.
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Huge thanks to @10DowningStreet and @MattHancock for inviting @eabibb and Isabelle to hear what last week’s deal on #lifesavingdrugs means to them
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People with CF are encouraged to make fitness a regular part of their routine. This can be a challenge, however, special celebrity guests, including singer Mel C, have filmed a series of videos for children with CF, with the aim of making fitness fun. ow.ly/N8IW50HLpBC
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We are thrilled to share our CF yellow taxi which is going to be lighting up the streets of London. Make sure you look out for it and share your photos with us! We'd like to thank Ubiquitous Taxis for all their support. We are getting excited for Wear Yellow Day already! 💛
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BREAKING NEWS: @Jeremy_Hunt Secretary of State for Health and Social Care calls on @VertexPharma to be more transparent on cost of #Orkambi cysticfibrosis.org.uk/news/h…
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Hi, can we DM you – this is a huge problem for people with #cysticfibrosis – we’d love to discuss ways in which people with CF can get fair access to your goods.
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Great to see the #cysticfibrosis community be praised for their work towards #LifeSavingDrugsNow
“I met a very brave young patient, Isabelle Bibb, at Downing Street. Thanks to the courage of campaigners and patients like Isabelle, cystic fibrosis drugs will be available on the NHS frontline, helping to improve thousands of lives.” – PM @BorisJohnson
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Fantastic news that the triple combination therapy, Trikafta has been approved by the FDA. We await the EMA’s timeline for approval. Drugs like this can only be transformative if they are made available to the people who need them. #LifeSavingDrugsNow
FDA has approved a breakthrough triple combination therapy for patients 12 & older with the most common cystic fibrosis mutation, estimated at 90% of the cystic fibrosis patient population. go.usa.gov/xp3Cg
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The European Commission has formally granted a licence to #Kaftrio, the first triple-combination therapy to tackle the underlying cause of #cysticfibrosis, bringing hope to thousands of people living with CF across the UK & beyond. Read our news story: bit.ly/2FDTgX2
The EMA license has been granted for the triple combination therapy #Kaftrio, known as #Trikafta in the US. More details to follow.
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People taking matters into their own hands starkly demonstrates people w/ #cysticfibrosis have been failed over last 3 years. What we need right now is solution that delivers for all. This means comprehensive deal between @NHSEngland & @VertexPharma with no more excuses or delay
TONIGHT: Orkambi, a cystic fibrosis drug, has had much political attention over its price.
Now Newsnight can reveal that UK patients have formed a ‘buyers’ club’ to import a cheaper copy of the drug from Argentina
22:30 @BBCTwo
#newsnight | @deb_cohen
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Updated Advice from the UK CF Medical Association for people with #cysticfibrosis and their families to help minimise their risk of #coronavirus infection: cysticfibrosis.org.uk/news/u… #cfandcoronavirus (1/3)
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After an eventful day of media coverage on access to #OrkambiNow, we would like to thank our community for sharing your stories with us and your health ministers. We'll leave you with another piece from the brave Luis and his mum for their plea on #Orkambi
"If your son had cystic fibrosis I know you would understand."
This 8-year-old boy has written to a drugs company to lower the price of Orkambi so that the NHS can afford to buy it - and it can help his cystic fibrosis "feel much better". | @cftrust
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Today’s front page of the @Daily_Express looks pretty good to us…
Thank you @ChrisMRiches 👏🏻⭐️
#CFWeek
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She said yes! #TeamCF runner Jon dropped down on 1 knee just before crossing #LondonMarathon finish line! Congratulations! #cysticfibrosis
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"We have #cysticfibrosis, of course we won't stop until CF does!" 💛
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Nick, aged 29, sadly died this month to #cysticfibrosis, leaving behind his family. Through #IVF, Nick & his wife Beth were able to have twins and as they grow up his memory lives on. If you are affected by Nick’s story, you can find our resources at: cysticfibrosis.org.uk/bereav…
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Thanks to @BBCHughPym for covering important story on access to #Orkambi for people with #cysticfibrosis on @BBCNews tonight - we need #LifeSavingDrugsNow bbc.co.uk/news/health-482319…
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We're very pleased to hear that Professor Jane Davies, Paediatric Respiratory Medicine and Experimental Medicine at Imperial College London, has been awarded an OBE for services to people with #cysticfibrosis.
Read the full story on our website ➡️ ow.ly/Y4Io50Skb9s
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The one and only James Mcavoy is taking part in #WearYellowDay! What do you think of his #yellow frock? Head over to our Instagram to see more celebs #CFYelfie photos on our story: instagram.com/cftrustuk
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And they're off!
@TheVernimator and @Precisionnn are two gamers with #cysticfibrosis who are challenging themselves to play Pro Evolution Soccer for 24 hours to raise funds for us, read about them here: ow.ly/Vm3m50zTmIs
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Ahead of three year anniversary since Orkambi was licenced, a community-led petition asking @VertexPharma to lower price of their medicines already has over 66k signatures. We urge Govt & Vertex to find right compromise to allow all to benefit immediately thepetitionsite.com/en-gb/67…
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Many congratulations on your OBE Josh! It is a well-deserved honour. Thank you for all you to do raise awareness of #cysticfibrosis and motivate so many people within the CF community of the benefits of sport and exercise.
I’m absolutely blown away and yes, I shed a tear! I’ve been awarded an OBE by Her Majesty The Queen for ‘services to Cystic Fibrosis’.
I’m welling up just writing this and can’t thank everyone enough for the huge support I’ve received on this journey! #CFWarriors #TeamSunshine
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Great to see Dr Keith Brownlee our Director of Policy, Programmes and Support alongside Alexandra and Catherine, who both have #cysticfibrosis, talking about #Kaftrio on @BBCBreakfast this morning.
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Let Wear Yellow Day Begin! Remember to share your #CFyelfie and text YELLOW to 70500 to donate £5 to the Trust!
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"People with CF are the most resilient people I know."
When Tim was diagnosed with #cysticfibrosis in 1971, his parents were told he would only live to his teenage years. Instead, he celebrated his 50th birthday earlier this year. Read more: ow.ly/5iDS50Eooqo
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