Cystic Fibrosis Trust @cftrust Twitter profile

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Cystic Fibrosis Trust

2 years

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!

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Cystic Fibrosis Trust

@cftrust

5 years

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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Cystic Fibrosis Trust

@cftrust

2 years

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) ❄️

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Cystic Fibrosis Trust

@cftrust

6 years

Remember Tim, who we've been following on his #LondonMarathon journey? Well he just made it extra-special 💍

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Cystic Fibrosis Trust

@cftrust

5 years

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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Cystic Fibrosis Trust

@cftrust

6 years

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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Cystic Fibrosis Trust

@cftrust

7 years

"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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Cystic Fibrosis Trust

@cftrust

4 years

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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Cystic Fibrosis Trust

@cftrust

4 years

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: #cysticfibrosis

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Cystic Fibrosis Trust

@cftrust

5 years

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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Cystic Fibrosis Trust

@cftrust

5 years

We are delighted too @MattHancock , and we pay tribute to the #cysticfibrosis community and everyone who fights for access to #LifeSavingDrugsNow across the UK

Department of Health and Social Care

@DHSCgovuk

5 years

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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Cystic Fibrosis Trust

@cftrust

5 years

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 #cfandcoronavirus

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Cystic Fibrosis Trust

@cftrust

4 years

Breaking news for the #cysticfibrosis community.

Health and Social Care Committee

@CommonsHealth

4 years

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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Cystic Fibrosis Trust

@cftrust

5 months

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.

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Cystic Fibrosis Trust

@cftrust

5 years

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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Cystic Fibrosis Trust

@cftrust

10 years

Thanks to @OneRepublic and Bryan Warnecke helping to raise awareness and money for CF with the new single #ILived . http://t.co/pQLQv4LRnx.

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Cystic Fibrosis Trust

@cftrust

4 years

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 : (1/2)

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Cystic Fibrosis Trust

@cftrust

4 years

"This will truly save lives", our Chief Executive David Ramsden on today's news for the #cysticfibrosis community.

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Cystic Fibrosis Trust

@cftrust

5 years

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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Cystic Fibrosis Trust

@cftrust

3 years

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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Cystic Fibrosis Trust

@cftrust

4 years

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:

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Cystic Fibrosis Trust

@cftrust

2 years

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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Cystic Fibrosis Trust

@cftrust

5 years

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 for more info #IHateYellow

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Cystic Fibrosis Trust

@cftrust

6 years

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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Cystic Fibrosis Trust

@cftrust

7 years

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: Make Orkambi available on the NHS for people with Cystic Fibrosis

Conventional CF treatments target the symptoms of CF, precision medicines like Orkambi tackle the cause of the condition. Though Orkambi is not a cure, it has been found to slow decline in lung...

petition.parliament.uk

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Cystic Fibrosis Trust

@cftrust

5 years

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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Cystic Fibrosis Trust

@cftrust

4 years

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.

EU Medicines Agency

@EMA_News

4 years

‼️ 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:

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Cystic Fibrosis Trust

@cftrust

4 years

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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Cystic Fibrosis Trust

@cftrust

5 years

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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Cystic Fibrosis Trust

@cftrust

5 years

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!

Welsh Government Health and Social Care

@WGHealthandCare

5 years

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.

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Cystic Fibrosis Trust

@cftrust

5 years

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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Cystic Fibrosis Trust

@cftrust

7 years

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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Cystic Fibrosis Trust

@cftrust

4 years

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

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Cystic Fibrosis Trust

@cftrust

8 years

Amazing scene down at mile 24 of #LondonMarathon for #TeamCF ! We are so happy she said yes Jon! #cysticfibrosis

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Cystic Fibrosis Trust

@cftrust

8 years

Confirmed! @CF_vs_Everest did it! Nick Talbot becomes first person with #cysticfibrosis to reach summitt of #Everest

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Cystic Fibrosis Trust

@cftrust

5 months

Cystic fibrosis patients get access to life-changing drugs on the NHS via @MailOnline

Cystic fibrosis patients get access to life-changing drugs on the NHS

UK regulators reached a deal with drug-makers Vertex over three 'miracle' drugs which can extend lives by decades, one of those set to benefit is little Rufus and his family.

www.dailymail.co.uk

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Cystic Fibrosis Trust

@cftrust

2 years

“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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Cystic Fibrosis Trust

@cftrust

2 years

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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Cystic Fibrosis Trust

@cftrust

5 years

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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Cystic Fibrosis Trust

@cftrust

4 years

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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Cystic Fibrosis Trust

@cftrust

6 years

“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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Cystic Fibrosis Trust

@cftrust

5 years

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

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Cystic Fibrosis Trust

@cftrust

4 years

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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Cystic Fibrosis Trust

@cftrust

7 years

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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Cystic Fibrosis Trust

@cftrust

3 years

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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Cystic Fibrosis Trust

@cftrust

4 years

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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Cystic Fibrosis Trust

@cftrust

4 years

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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Cystic Fibrosis Trust

@cftrust

4 years

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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Cystic Fibrosis Trust

@cftrust

4 years

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):

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Cystic Fibrosis Trust

@cftrust

4 months

Spotted: the BT Tower in London getting involved with #WearYellowDay this year! 💛🎉

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Cystic Fibrosis Trust

@cftrust

6 years

"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

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Cystic Fibrosis Trust

@cftrust

7 years

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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Cystic Fibrosis Trust

@cftrust

4 years

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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Cystic Fibrosis Trust

@cftrust

5 years

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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Cystic Fibrosis Trust

@cftrust

3 years

Fantastic to see Kate's #Kaftrio story on @itvnews this evening! In case you missed it, you can find out more below now.

Girl with cystic fibrosis hopes 'life will be fairer' after getting new NHS drug | ITV News

Kate Farrer, who has spent much of her life in and out of hospital, is among hundreds of children who can now access a 'life-changing' cystic fibrosis drug. | ITV National News

www.itv.com

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Cystic Fibrosis Trust

@cftrust

5 years

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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Cystic Fibrosis Trust

@cftrust

6 months

London Marathon was only the start for Sophie, today she is running her 3rd of 36 marathons in 36 days! 💛 Find out more ➡️

Sophie Grace's page

The WHY behind the Challenge I was born with Cystic Fibrosis, a life-threatening lung disease, and was initially given a poor prognosis, not expected to make it past 16, let alone reach 30. At 19, fac

2024tcslondonmarathon.enthuse.com

BBC Essex

@BBCEssex

7 months

Sophie Grace Holmes has cystic fibrosis and is running 36 marathons in 36 days.

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Cystic Fibrosis Trust

@cftrust

2 years

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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Cystic Fibrosis Trust

@cftrust

6 years

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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Cystic Fibrosis Trust

@cftrust

5 years

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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Cystic Fibrosis Trust

@cftrust

6 years

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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Cystic Fibrosis Trust

@cftrust

5 years

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:

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Cystic Fibrosis Trust

@cftrust

4 years

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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Cystic Fibrosis Trust

@cftrust

5 years

We stand with UKCFMA in urging @MattHancock to do everything he can to make the triple therapy available. #cysticfibrosis

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Cystic Fibrosis Trust

@cftrust

5 years

Over a minute of pure #Dance4CF joy! Thank you @StephenMcGann for showing us just how its done 💛

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Cystic Fibrosis Trust

@cftrust

3 years

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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Cystic Fibrosis Trust

@cftrust

2 years

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) ⭐️

“Our hope is for Rufus to be ordinarily extraordinary”

When Ben started documenting the birth of his baby boy Rufus and their journey with cystic fibrosis (CF) on Twitter back in July, he could never have imagined how his family’s story would capture the...

www.cysticfibrosis.org.uk

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Cystic Fibrosis Trust

@cftrust

2 years

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)

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Cystic Fibrosis Trust

@cftrust

2 years

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 ➡️

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Cystic Fibrosis Trust

@cftrust

1 year

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) ➡️

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Cystic Fibrosis Trust

@cftrust

7 years

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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Cystic Fibrosis Trust

@cftrust

1 year

Our Chief Executive, David Ramsden, shares his perspective following NICE's announcement on Friday. You can submit your feedback to the NICE consultation today. ➡️ You can also read our updated FAQs on our website now. ➡️

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Cystic Fibrosis Trust

@cftrust

6 years

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

CYSTIC FIBROSIS BREAKTHROUGH: Hope for British sufferers

Britain's cystic fibrosis sufferers have received fresh hope of receiving a life-saving drug after officials agreed to sit down together to try and end a funding deadlock.

www.express.co.uk

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Cystic Fibrosis Trust

@cftrust

6 years

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 )

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Cystic Fibrosis Trust

@cftrust

6 years

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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Cystic Fibrosis Trust

@cftrust

6 years

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:

What is cystic fibrosis, exactly?

Cystic fibrosis is a genetic condition mostly affecting the lungs and digestive system. You are born with cystic fibrosis and cannot catch it later in life, ...

www.youtube.com

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Cystic Fibrosis Trust

@cftrust

2 years

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.

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Cystic Fibrosis Trust

@cftrust

5 years

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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Cystic Fibrosis Trust

@cftrust

3 years

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.

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Cystic Fibrosis Trust

@cftrust

3 years

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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Cystic Fibrosis Trust

@cftrust

6 years

BREAKING NEWS: @Jeremy_Hunt Secretary of State for Health and Social Care calls on @VertexPharma to be more transparent on cost of #Orkambi

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Cystic Fibrosis Trust

@cftrust

5 years

@sainsburys @Partepicpartmam 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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Cystic Fibrosis Trust

@cftrust

5 years

Great to see the #cysticfibrosis community be praised for their work towards #LifeSavingDrugsNow

UK Prime Minister

@10DowningStreet

5 years

“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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Cystic Fibrosis Trust

@cftrust

5 years

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

Media Affairs

@FDAMedia

5 years

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.

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Cystic Fibrosis Trust

@cftrust

4 years

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:

European Commission formally approves triple therapy

The European Commission has formally granted a licence to Kaftrio, the first triple-combination therapy to tackle the underlying cause of cystic fibrosis.

www.cysticfibrosis.org.uk

Cystic Fibrosis Trust

@cftrust

4 years

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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Cystic Fibrosis Trust

@cftrust

5 years

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

BBC Newsnight

@BBCNewsnight

5 years

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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Cystic Fibrosis Trust

@cftrust

5 years

Updated Advice from the UK CF Medical Association for people with #cysticfibrosis and their families to help minimise their risk of #coronavirus infection: #cfandcoronavirus (1/3)

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Cystic Fibrosis Trust

@cftrust

6 years

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

Channel 5 News

@5_News

6 years

"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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Cystic Fibrosis Trust

@cftrust

4 months

Today’s front page of the @Daily_Express looks pretty good to us… Thank you @ChrisMRiches 👏🏻⭐️ #CFWeek

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Cystic Fibrosis Trust

@cftrust

8 years

She said yes! #TeamCF runner Jon dropped down on 1 knee just before crossing #LondonMarathon finish line! Congratulations! #cysticfibrosis

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Cystic Fibrosis Trust

@cftrust

8 months

"We have #cysticfibrosis , of course we won't stop until CF does!" 💛

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Cystic Fibrosis Trust

@cftrust

6 years

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:

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Cystic Fibrosis Trust

@cftrust

5 years

Thanks to @BBCHughPym for covering important story on access to #Orkambi for people with #cysticfibrosis on @BBCNews tonight - we need #LifeSavingDrugsNow

Cystic fibrosis drug campaign makes no progress in year

Orkambi has been licensed for use in the UK, but is still not available to all patients with the condition.

www.bbc.co.uk

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Cystic Fibrosis Trust

@cftrust

5 months

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 ➡️

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Cystic Fibrosis Trust

@cftrust

6 years

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:

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Cystic Fibrosis Trust

@cftrust

4 years

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:

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Cystic Fibrosis Trust

@cftrust

6 years

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

petition: Help Luis & others with Cystic Fibrosis to access your life-saving medicines

Vertex - lower the price (72685 signatures on petition)

www.thepetitionsite.com

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Cystic Fibrosis Trust

@cftrust

5 years

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.

Josh Llewellyn-Jones OBE

@JoshLJ24

5 years

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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Cystic Fibrosis Trust

@cftrust

4 years

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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Cystic Fibrosis Trust

@cftrust

8 years

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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Cystic Fibrosis Trust

@cftrust

4 years

"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:

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