Welcome to ‘CF in 7 Days’, a new series of video updates for the cystic fibrosis community! We are all navigating our way through the current coronavirus outbreak and we want to take you through the developments each week. Every Thursday tune in for your ‘CF in 7 Days’ round up. We also want to hear from you on what you’d like us to focus on. Comment on this post to let us know! | Cystic Fibrosis Trust
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Welcome to ‘CF in 7 Days’, a new series of video updates for the cystic fibrosis community! We are all navigating our way through the current coronavirus outbreak and we want to take you through the developments each week. Every Thursday tune in for your ‘CF in 7 Days’ round up. We also want to hear from you on what you’d like us to focus on. Comment on this post to let us know! | Cystic Fibrosis Trust
7.5K viewsMar 26, 2020
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Living with cystic fibrosis brings many unique challenges, and your voice matters in shaping the future of research, care, and support for everyone affected by CF. We want to hear from you, but we know that surveys can feel long and tiring, so we’re keeping this request short and sweet. There are just two questions: 🟡 What are the biggest challenges you face living with cystic fibrosis? 🟡 And where do you feel you, and your family, need the most help and support in the future? Sharing your vie
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Living with cystic fibrosis brings many unique challenges, and your voice matters in shaping the future of research, care, and support for everyone affected by CF. We want to hear from you, but we know that surveys can feel long and tiring, so we’re keeping this request short and sweet. There are just two questions: 🟡 What are the biggest challenges you face living with cystic fibrosis? 🟡 And where do you feel you, and your family, need the most help and support in the future? Sharing your vie
10.8K views5 months ago
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Learning for the first time that your child has cystic fibrosis can be scary. Over the past few months, we've been working with families across the CF community to put together this video and a new information pack for those dealing with new diagnosis based on their real experiences. Download the pack and more information at http://cysticfibrosis.org.uk/about-cf/new-diagnosis | Cystic Fibrosis Trust
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Learning for the first time that your child has cystic fibrosis can be scary. Over the past few months, we've been working with families across the CF community to put together this video and a new information pack for those dealing with new diagnosis based on their real experiences. Download the pack and more information at http://cysticfibrosis.org.uk/about-cf/new-diagnosis | Cystic Fibrosis Trust
12K viewsJun 12, 2015
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Ever wanted to ask you brother, sister or friend with cystic fibrosis a burning question about their life with CF? This video project may help with some answers! | Cystic Fibrosis Trust
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Ever wanted to ask you brother, sister or friend with cystic fibrosis a burning question about their life with CF? This video project may help with some answers! | Cystic Fibrosis Trust
49.3K viewsMay 2, 2018
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Join TeamCF in 2025 and Make a Difference
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Join TeamCF in 2025 and Make a Difference
179.4K viewsDec 23, 2024
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Care is changing rapidly in CF. In this video, Jana Witt, our Clinical Quality Improvement Manager, reflects on insights from our first ever CF workforce survey of more than 150 CF professionals. Some of the key findings show that workload for CF professionals is evolving, rather than reducing, and that CF teams are supporting the community with a wide range of issues – not just lungs. Head to our website to find out more about these insights and read the survey's findings in full! ➡️ https://ow
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Care is changing rapidly in CF. In this video, Jana Witt, our Clinical Quality Improvement Manager, reflects on insights from our first ever CF workforce survey of more than 150 CF professionals. Some of the key findings show that workload for CF professionals is evolving, rather than reducing, and that CF teams are supporting the community with a wide range of issues – not just lungs. Head to our website to find out more about these insights and read the survey's findings in full! ➡️ https://ow
1.1K views4 months ago
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Meet Dr Catriona Kelly a CFRD researcher. There are so many areas of research that are crying out for breakthroughs. Please help to make 2021 an exciting new chapter for life-saving research by making a donation today: https://www.cysticfibrosis.org.uk/donate | Cystic Fibrosis Trust
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Meet Dr Catriona Kelly a CFRD researcher. There are so many areas of research that are crying out for breakthroughs. Please help to make 2021 an exciting new chapter for life-saving research by making a donation today: https://www.cysticfibrosis.org.uk/donate | Cystic Fibrosis Trust
1.7K viewsDec 18, 2020
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CF in the Media: March '23 edition. Here are four things that happened in the global CF community this March: - CF Trust delivered over 1000 signatures to No.10 Downing Street, demanding an urgent re-evaluation of the prescription charges exemption list and free prescriptions for everyone with CF. - Make a Wish Foundation removes cystic fibrosis from automatic qualification. -Ireland approves Kaftrio for children aged 6-11. - Celeb Ambassador James Dunmore chats to us in the latest edition of CF
479 viewsApr 6, 2023
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Our Director of Medical Affairs, Dr Keith Brownlee, talks us through the importance of taking measures to protect your CF health over the winter months. He shares his top tips, including information around flu jabs, as well as eligibility for COVID-19 vaccinations. If you have any questions or concerns, please get in touch with your CF team. You can also get in touch with our Helpline. 🕒 Monday–Friday, 10am–4pm ☎️ 0300 373 1000 or 020 3795 2184 ✉️ helpline@cysticfibrosis.org.uk 📱 Chat on Whats
2.7K views6 months ago
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In our 2025 Your Life and CF survey, we asked young people whether there is anything that makes them happy that they could suggest to other young people with CF to improve their wellbeing. There were lots of suggestions – from the importance of friendships and family, to exercise and being open with others. A big thank you to the young people from our Youth Advisory Group (YAG) for sharing some of the answers in this video. What makes you happy? Share your suggestions in the comments! Click on t
1.3K views5 months ago
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"It was inspiring to see so many world class scientists together in one place, all with a determination to find solutions to the problems that the CF community are facing." Last month, over 200 scientists and clinical teams joined us to hear the latest news on lab- based and clinical research. From cutting edge research in the lab, to using UK CF Registry data in clinical trials, it was a packed two days. At the heart of the conference were your research priorities. Peter, who has a son with CF,
1.2K views4 months ago
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Last week saw scientists and clinicians come together for our 2025 UK CF Conference, the UK's biggest conference dedicated to all aspects of CF research, from biomedical science to improving clinical care. 🔬 A jam-packed agenda covered everything from growing older with CF to pregnancy, cancer screening to gut symptoms. A big thank you to everyone who attended, and all of our amazing speakers. It was inspiring to see the research community uniting to bring us a step closer to a life unlimited f
4K views6 months ago
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A message from our Chief Executive, David Ramsden, following the final guidance published today from NICE. Our website has the latest information on Creon, you can check this out by clicking the link. ➡️ https://ow.ly/cKQ350SIW5J Please do get in touch with your CF teams if you are struggling to access creon from your local pharmacy. For information or support with any aspect of #cysticfibrosis our friendly Helpline is here for you 💛 📞 Call 0300 373 1000, Monday - Friday, 10am - 4pm | Cystic F
757 viewsJul 24, 2024
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About Cystic Fibrosis
Nov 9, 2021
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“My advice for people with CF, who are dealing with conversations like this, about reproductive health, would be to listen to yourself and to trust yourself.” Erin Abay, an adult with cystic fibrosis who also has CF-related diabetes, knew from a young age that raising children would be a challenge. After careful consideration and consultation with her care team, Erin and her husband decided not to have children. | Cystic Fibrosis Foundation
4.3K views2 months ago
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While 90% of the population have heard of CF, nearly 30% of people think it only affects the lungs. Tilly from CF Trust Youth caught up with our staff members to find out some of the ways CF affects the body. Next week, we'll be shining a spotlight on some of the additional symptoms and complications of CF outside of the lungs, from gut symptoms and diabetes to fertility and bone health. Follow along for more. #cysticfibrosis #notjustlungs #cftrust | Cystic Fibrosis Trust
5.2K views5 months ago
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"My whole life had been changed because of my CF and that wasnt something I could ignore" Ellie takes us through her journey with her mental health and how it is linked to her cystic fibrosis. If you are experiencing similar issues to Ellie you can always chat to your CF team or our confidential Helpline offers a listening ear, as well as information and support on any aspect of cystic fibrosis whether it's guidance with a specific problem or just a friendly, knowledgeable person to chat to: htt
5.4K viewsDec 9, 2020
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A message from our Chief Executive, David Ramsden, to mark our 60th anniversary today. "Over the 60 years there's been incredible progress and incredible change in the lives of many people with #cysticfibrosis. And that's thanks to all of you, our incredible supporters." Keep an eye out throughout the year, as we continue to mark this very special milestone. Since 1964, we won’t stop until CF does. 💛 ➡️ https://www.cysticfibrosis.org.uk/60 | Cystic Fibrosis Trust
2.7K viewsFeb 20, 2024
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📣🚶 CALLING ALL STEPPERS! 🚶📣 Step into February with purpose! Join Cystic Fibrosis Trust’s fundraising challenge for a future where everyone with CF can live longer, healthier lives. 💛 Register and get your FREE T-shirt 👕 | Cystic Fibrosis Trust
1.2K views4 months ago
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📣🚶 CALLING ALL STEPPERS! 🚶📣 Step into February with purpose! Join Cystic Fibrosis Trust’s fundraising challenge for a future where everyone with CF can live longer, healthier lives. 💛 Register and get your FREE T-shirt 👕 | Cystic Fibrosis Trust
112K views4 months ago
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Every year with her dad Martin is a gift for Emily. Watch our Christmas Appeal video to see how cystic fibrosis affects them and how you can give the gift of hope this Christmas at www.cysticfibrosis.org.uk/christmas | Cystic Fibrosis Trust
63.2K viewsNov 1, 2017
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Get involved in the brightest ☀️ fundraising day of the year! #WYD24k #CFweek 💛 | Cystic Fibrosis Trust
5.7K viewsJun 6, 2024
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"I thought those people would be in my life forever and I'd be in theirs." To kick off CF Week, today we're sharing the story of Jane. When she was in her 20s, Jane met a group of other people with CF who she became firm friends with. But in 1991, cross-infection rules came into place, and almost overnight, Jane lost her support network of people who truly understood what it meant to live with CF. Many people don’t realise that people with CF aren’t able to meet up with one another. Cross-infect
7.1K views10 months ago
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The autumn edition of CF Life magazine is out now! 🍁 We loved chatting to our trustee Sophie Pierce in this edition, to hear all about her epic row across the Atlantic Ocean and how she managed her CF at sea. 💛 Elsewhere in the magazine, we share our latest information and resources on neurodiversity and CF, look at how GI (gastrointestinal) symptoms can impact daily life, and shout out some of our amazing volunteers! 📰 Head to our website to read a digital version of CF Life, or join our mai
1.3K views6 months ago
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"Lissy has had 19 years of this, and I want more for my daughter." For many people, Christmas is the most wonderful time of the year. But for people with cystic fibrosis, the festive season can be the most worrying. Together, we can change that. Turn worries into wonder this festive season. Head to our website to find out how you can get involved. ❄️ https://ow.ly/Wg6H50XpxLy | Cystic Fibrosis Trust
9.1K views5 months ago
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“You don’t get a day off from cystic fibrosis, it’s always there.” This is Charlotte, who features on the posters for our ‘No Day Off’ campaign. She shares the reality of living with #cysticfibrosis every day as well as what she would do if she had a day off from CF. Find out more about our awareness campaign and how you can get involved on our website now! ➡️ https://ow.ly/CI8T50RNuOX | Cystic Fibrosis Trust
3.2K viewsMay 23, 2024
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Find out how to get the support and adjustments you need to balance work and cystic fibrosis in this new video on flexible working and reasonable adjustments. For more support, speak to your CF team or contact our Helpline. 🕒 Monday–Friday, 10am–4pm ☎️ 0300 373 1000 or 020 3795 2184 ✉️ helpline@cysticfibrosis.org.uk 📱 Chat on WhatsApp 07361 582053 #cysticfibrosis #rightsatwork #flexibleworking #DisabilityInTheWorkplace #cftrust | Cystic Fibrosis Trust
230 views7 months ago
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Today, the National Institute for Health and Care Excellence (NICE) have given approval for the life-changing cystic fibrosis modulator drugs – Kaftrio, Symkevi and Orkambi - 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. This is a really significant moment as it offers certainty and hope to thousands of people affected by CF, a life-long, life-limiting condition without a cure. Head to our web
8.4K viewsJun 20, 2024
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Reckon you can beat Joe Lycett on commitment to the cause this FeBREWary? Prepare to put the kettle on and raise funds to make a difference to the lives of those living with cystic fibrosis:http://ow.ly/vIhO50Dhrb5 | Cystic Fibrosis Trust
14.8K viewsJan 25, 2021
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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. ➡️ https://ow.ly/wUfO50Q55kK You can also read our updated FAQs on our website now. ➡️ https://ow.ly/PeJ650Q55ou | Cystic Fibrosis Trust
2.5K viewsNov 7, 2023
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