Our impact 2023/24

Cystic Fibrosis Trust is the only UK-wide charity uniting people to stop cystic fibrosis (CF). For 60 years, we've funded vital research, campaigned for change, and supported our community whenever and wherever they've needed us. And we won't stop until everyone with cystic fibrosis can live without limits.

Download the 2023/24 impact report as a PDF

A letter from David Ramsden

"This year marked our 60th anniversary and it’s been a privilege to reflect on the incredible progress we’ve seen over the past six decades. But there is still so much important work to be done. New treatments are making a real difference, but they don’t work for everyone and are not a cure. CF still dominates and shortens far too many lives.

Together, we’ve achieved a lot over the past 12 months. From winning the fight for life-changing modulator drugs to be approved on the NHS, to announcing the funding of exciting research that will design new medicines for people with rarer CF mutations, the progress we’ve made has been remarkable. None of it would have been possible without our amazing supporters. Thanks to you, we’ll continue our work funding groundbreaking research, providing world-class information, campaigning for change, and supporting our community every step of the way. We won’t stop until everyone can live a long and full life – a life where they are physically well, mentally well and fulfilled.

Thank you for uniting with us for a life unlimited for everyone with CF.” 

David Ramsden, Chief Executive of Cystic Fibrosis Trust

Guided by your research priorities, this year we continued to fund world-leading research that will make a huge impact for those living with CF.

Here are some of the highlights...

Collaborative research for the future

Dr Mike Gray at the University of Newcastle is leading a Strategic Research Centre (SRC) focusing on designing compounds that could be CF medicines of the future for those with rare CFTR mutations who are not able to benefit from modulator medicines.

Dr Imogen Felton and Professor Jane Davies of Royal Brompton Hospital and Imperial College London are running an SRC which looks into the impact of pregnancy, childbirth, and breastfeeding for those with CF.

Professor Nick Simmonds at Royal Brompton Hospital and Imperial College London is leading a Development Award (DA) to investigate alternative ways of diagnosing people with CF who have rarer mutations.

And Dr Freddy Frost from Liverpool Heart and Chest Hospital is running a DA looking at the heart health of people with CF.

Read more about our £2m pledge to address research priorities of people with CF

Meanwhile, the CF AMR Syndicate, a partnership of the Cystic Fibrosis Trust, Medicines Catapult, and LifeArc, aims to develop new treatments for people with cystic fibrosis. This year, they published patient-centred Target Product Profiles (TPPs) for diagnostic tests for CF lung infections. They are now discussing how to use these TPPs to improve diagnostic options in clinics.

Read more about the Target Product Profiles from the CF AMR Syndicate

CTAP leads on groundbreaking research

The first phase 1 trial supported by our Clinical Trial Accelerator Platform (CTAP) early phase network opened late in 2023, testing a genetic therapy for adults who don’t benefit from modulators. Two more phase 1 trials are due to open later in 2024.

Since CTAP’s official launch in September 2017...     

• over 4,000 babies, children and adults have enrolled on to a CTAP study
• over 70 CF studies have been supported by CTAP so far 
• study set-up times have decreased by 73% across the CTAP network
• more than three quarters of studies have exceeded 90% of their recruitment target 
• the average retention rate for CTAP studies is 98%. 

Learn more about clinical trials

Amplifying the CF community voice

Over the last year there have been a total of 24 research-related involvement activities, including 14 focus groups, covering everything from new diagnostics for lung infections through to looking at the mental health effects of Kaftrio.

At the UK CF Conference in October 2023, Professor Jane Davies gave a plenary presentation on ‘Re-learning CF’, informed by members of the Trust’s involvement group.

Find out more about our Involvement Group

Uniting researchers for a life unlimited

The October 2023 UK CF Conference showcased the Trust’s research, attracting 146 attendees in London and 73 online. It highlighted the CF Innovation Hub, our partnerships with LifeArc and CF AMR Syndicate, and featured lively presentations by early career researchers. Supported by CF community mentors, a follow-up online event allowed four of these researchers to present their work to the CF community.

The sixth annual UK Cystic Fibrosis Clinical Trials Conference, held in Leeds in March 2024, explored when and how the community’s research priorities could be met by future clinical trials. Marking the Trust’s 60th anniversary, it also reflected on six decades of CF research progress. Watch the conference back on YouTube.

Quality Improvement

Our patient experience surveys, run cyclically, help us collaborate with CF centres to identify successes and areas for improvement. The results of the children’s survey released this year showed families rate care highly but noted gaps in psychological support and social work. The adult services survey began in November 2023, with results expected soon.

We also engaged over 150 CF professionals in virtual Quality Improvement (QI) Share & Learn events and ran quality improvement sessions with several paediatric CF teams to support their projects.

Learn more about how our QI team work to improve quality of care in CF centres

And in March 2024, the Trust hosted a conference for CF professionals on key topics like patient-centred care, neurodiversity in CF, and treatment adherence.

Creon shortages

There have been concerning ups and downs in the availability of Creon over the past year. We’ve been meeting regularly with Viatris, who make Creon, and the NHS to ensure everything is being done to fix the issues and prioritise our community, who depend on this medicine.

Our social media posts about the Creon shortages had a combined reach of 117,550 across Facebook and Instagram.

Take a look at the latest updates on the supply of Creon

Cost of living

The cost of living in the UK is a worry for everyone – but especially for our community, who are already hit by the additional costs of living with CF. We’ve continued to offer financial support, advice and information to those with CF who are affected by the cost of living.

Find out more about our cost of living support

Modulator appraisal

In June 2024, we were delighted that NICE, Vertex and the NHS were able to come to an agreement, and modulator drugs became permanently available on the NHS.

We know that not everyone can benefit from modulators, which is why we continue to invest in cutting-edge research for effective treatments for all. We won't stop until everyone with CF can live a life unlimited.

Read the full story of our fight for life-saving drugs

Prescription charges

That many people with CF still have to pay for their prescriptions is high on the agenda of our community. We’ve worked hard to raise awareness of this issue in the media, taken a leading role in the Prescription Charges Coalition, and written to key ministers, making sure the voices of people with CF are heard.

UK CF Registry

The UK CF Registry is a pioneering database containing the health data of around 99% of people with CF in the UK.

This year, the Registry:

• concluded three drug safety studies, generating total income of over £1.7 million
• received up to £160,000 from NHS contracts for generating public reports and supporting the commissioning of CF services in England
• received 51 data requests and in March 2024, we received our 500th data request.

Financial support

We provide financial support to the CF community with a focus on helping people with CF stay well.

This year, we provided:

• 1,242 welfare grants, totalling over £310,000
• 324 Cost of Living Fund grants
• 61 Joseph Levy Education Fund grants
• £20,000 in Helen Barrett Bright Ideas Awards
• and supported our community to secure £1.9m in benefits through income maximisation.

Without the help of the Joseph Levy Education Fund grant, my university experience would have been completely different.

– Emily, who has CF

Information and resources

We offer free, balanced information on all aspects of life with CF so that you can use it along with the medical advice you receive from your CF team to make informed decisions about your lifestyle, treatment and care, however you’re affected by cystic fibrosis.

This year we created new publications on...

• inhaled therapies
• hearing loss
• vaping
• inconclusive cf diagnosis (CFSPID)
• CF diabetes
• the sweat test.

Cystic Fibrosis Trust is part of the PIF TICK accreditation scheme, run by the Patient Information Forum (PIF). This means that you can be assured that what you’re reading, watching or listening to is evidence-based, understandable, jargon-free, up-to-date and produced to the best possible standard.

“A new diagnosis is incredibly overwhelming and tough, which is part of the reason Cystic Fibrosis Trust is so important to us.” 

– Chris, whose son Ambrose has CF

Young people

Building Brighter Futures, our programme for 6–14-year-olds with CF and their siblings, saw 88 children attending 32 courses and one-off events, including baking sessions, resilience workshops, and exploding science experiments!

Our Youth Advisory Group (YAG), made up of 14–25-year-olds with CF or loved ones with CF, held 17 meetings this year.

Strong Beginnings, our support programme for parents of children with CF aged 0–6, ran peer support events, music sessions, and parent/baby yoga. Almost 40 parents attended these sessions.

I think it’s really important that we’re able to connect online with the people we relate to most, as we can’t meet in person due to cross-infection and this can get incredibly isolating. So, it’s great that we can just have a chat and a catch-up as well as working on upcoming projects.

– Tilly, who’s a member of YAG and has CF

Work Forwards

This year, we’ve provided detailed one-to-one support to 59 people and delivered a range of online group sessions on topics including transferable skills and rights and adjustments at work.

Learn more about how Work Forwards could support you

CForYourself

In Series 2 of the CForYourself podcast, listeners enjoyed a range of topics, from dating with CF to navigating menopause. The eight-episode series featured well-known voices like Made in Chelsea star James Dunmore and Married at First Sight Australia’s Lyndall Grace, adding celebrity insight to the conversations.

With 1,050 downloads, the series’ most popular episode, #CFTruths: living with an invisible condition, resonated deeply with the audience, shedding light on the challenges of living with an often-misunderstood condition.

Check out our podcast #CForYourself

Socials

Over the past year, our social media presence has achieved remarkable results, with a combined reach of 6,919,658 across Facebook, Instagram, and TikTok, and 1,860,953 impressions on LinkedIn and X.

Video content has been especially engaging, generating over half a million views across all channels. These numbers highlight the growing impact of our online efforts in raising awareness and connecting with a diverse audience.

In the media 

We had 1,453 pieces of coverage over the last year, with a huge potential editorial reach of 7.8 billion.

Celebrities

Athlete Roger Black took on a new challenge when he battled the Beast on The Chase, as well as recording a heartfelt video cheering on Great Strides participants!

James Dunmore and Married at First Sight Australia’s Lyndall Grace joined us on the CForYourself podcast, sharing their stories with listeners. Lyndall also went live on Instagram, bringing the community together for a fun and interactive session, and James kept up his support by sharing our cause in Fabulous magazine.

Jenny Agutter lit up Loose Women with a special promo for Carols by Candlelight, and later delivered a moving reading at the event itself, alongside James Dunmore and the talented David Haig. Jenny also joined Vincent Franklin to create a lively Instagram Reel supporting our FeBrewary campaign.

And on Wear Yellow Day, we were thrilled to have presenter Richard Madeley, Interior Design Master Jack Kinsey, and comedian Nick Mohammed join a host of celebrities showing their support in vibrant yellow!

CF Week 

CF Week was a huge success, raising an incredible £78k on Wear Yellow Day! With media coverage reaching 1.7 million people, highlights included a James Dunmore interview in Fabulous and an awareness piece in Take A Break. BBC Access All helped amplify the Your Life And CF survey to over 4.6 million, and our social media efforts reached 450,000+ with over 1 million impressions. We received £115,000 worth of ‘out of home’ (OOH) ads, reaching 800,000 people, and created impactful video and blog content from two research centre visits.

Eight celebrities, including Nick Mohammed, Lyndall Grace, and our ambassador Jenny Agutter, joined CF Week. Our community shared their #CFTruths, with people with CF guest editing CF News and taking over our Instagram stories.

Politicians across the UK showed their support too, with 47 wearing Trust pins, 22 parliamentary mentions of CF, and Welsh First Minister Mark Drakeford publicly supporting CF Week. Thank you to everyone who helped make CF Week so impactful!

Thriving together

Our online community forum is a safe space for everyone connected to CF to seek information, access support, and chat with others who know what you’re going through. This year, the community has had over 500 new sign-ups, over 400 posts, and 34,000 page views.

Join our online community

Empowering parents

This year, we partnered with Home-Start UK to support new parents with CF, recognising the rise in CF parents. A pilot project in Glasgow trained Home-Start volunteers in CF care, ensuring parents can access knowledgeable support. This collaboration shows how we can combine expertise to address evolving needs in the CF community.

CF Connect is our peer support service for parents of children with CF. This year, we trained a new group of parent volunteers, who’ll provide invaluable support to other parents like them.

Learn more about CF Connect

Helena’s story

Recently we put Helena, a parent of a young baby with CF, in touch with one of our trained parent volunteers. Helena had been through a difficult time, figuring out her new routine and keeping her baby well – she had questions about the future. Helena found solace in talking to one of our trained volunteers who had been there herself and understood her worries. We provided a safe, non-judgemental space for Helena to get things off her chest and talk her concerns through.

We would like to thank all the fantastic individual donors and supporters, organisations, charitable trusts, foundations and corporate partners who support our work to make sure everybody with CF can live a life unlimited. Thanks to you, we can make sure we’re here for everyone with CF when they need us. We greatly appreciate everything you do for the CF community – we couldn’t do it without you.

Our fundraising efforts brought in £7.62 million gross (£5.42 million net) this year! Here’s how our incredible supporters made it happen.

Community and events

We’re so grateful to our incredible community and events fundraisers, who raised a fantastic £2.27 million to make sure we can keep working towards a life unlimited for everyone with CF.

• Our fundraisers took on some incredible challenges, including London Marathon, London Landmarks Half Marathon, Edinburgh Marathon Festival, London to Brighton Cycle Ride, skydives, and overseas treks, to raise over £1 million.
• The CF community have been very busy fundraising through amazing events and activities such as Wear Yellow Day events, FeBrewary activities, balls, boxing matches, football matches, quiz nights, and games nights, raising over £1.08 million.
• On Wear Yellow Day alone, our supporters raised over £78,000.
• Our dedicated branches and groups located all over the United Kingdom raised £100,000.

Find out how you can join #TeamCF and change lives in 2025

Regular gifts

We’re grateful to our loyal donors, whose ongoing support contributed over £800,000 (including Gift Aid) in 2023/24, allowing us to plan effectively for the future. This year’s direct mail appeal and telemarketing campaign with Ethicall, our telephone fundraising agency, raised an additional £18,000.

Make a one-off donation or sign up to be a regular giver

Gifts in Wills

We were privileged to receive legacies from 88 people, and 42 supporters informed us of their commitment to leaving a legacy gift. We remain committed to promoting legacy giving through various channels and providing a free Will service to our supporters all year round.

Find out more about gifts in Wills

Corporate partnerships

We’re grateful for the continued support from our corporate partners this year, and we’d like to thank AJN Steelstock for continuing to back the Innovation Hub; Crane CPE for enabling funding opportunities through their Crane Widows and Children Fund; and The Bip Group, whose expertise strengthened the Helen Barrett Bright Ideas Awards.

We were honoured to be named charity of the year by C-Stem, Orlo, McLemore Konschnik LLP, and SHS Drinks, and the benefitting charity for the Britannia Stakes race at Ascot thanks to the Betting and Gaming Council and their members.

Events like the UK CF Clinical Trials Conference, UKCFC and the Annual Registry Meeting are essential in highlighting our work, and we thank our dedicated sponsors for their ongoing support and enthusiasm.

We value the ongoing support from our advertising partners, such as Clear Channel, promoting our awareness campaigns through gift-in-kind outdoor advertising and campaign advice.

Find out more about corporate partnerships

Philanthropy

We would like to thank the generous and committed support of trusts and foundations, the National Lottery Community Fund, and BBC Children in Need who provide donations and multi-year grants. This is critical to the Trust’s provision of services to our CF community and world-leading research.

In our 60th anniversary year, we’re especially thankful for our long-term partners, the Robert Luff Foundation and the Joseph Levy Foundation, and we deeply appreciate the dedication of our Sixty Five Roses Club, who have raised over £760,000 over the last decade.

As the CF community faces post-pandemic adjustments and the cost of living crisis rolls on, philanthropic support has allowed us to extend our Cost of Living Support Package programme which launched in 2022. This year we have supported 324 people with CF in low-income households with grants for energy bills, food and basic essentials over winter.

Find out more about philanthropy

Research

The refreshed CF research priorities from 2022 continue to guide our strategy and funding, focusing on under-resourced areas like ageing with CF, CF diabetes, and the long-term effects of modulators.

We're building new networks and partnerships, including Medicines Discovery Catapult and LifeArc, to accelerate research on CF lung infections. We remain committed to supporting more effective treatments, especially for those who cannot benefit from current modulators.

Supporting our community

We continue to adapt our services to meet changing needs while maintaining core support. As issues important to our community continue to affect them, like the global Creon shortages and the national cost of living crisis, we’ll continue to be there to make sure people with CF have the support they need to look after their health.

As a result of our pioneering collaboration with Home-Start, we’re continuing to look at ways we can match people in our community with their peers who can support them. We’re also expanding support for neurodivergent individuals and those bereaved by CF.

Changing lives through data

We’ll be sharing the results from our second adult services patient experience survey, along with personalised feedback for all the CF centres that took part. This autumn, we’ll also be gathering new data on CF staffing levels and launching a survey for CF professionals to get their take on how care and workloads are changing. Plus, we’re expanding our holistic follow-up offer to help CF centres dive into their data and plan targeted improvements, with adult services joining in next year.

Our Registry data will continue to support NICE in reviewing the impact of CF modulator therapies, and we’ll be holding CF Live events to explain the data collection process and answering any questions. We’re also looking to expand the types of data we collect to better support our community as CF care evolves.

Remembering Rachel

We would like to say a special thank you to Sir Ivan Lawrence KC, a long-term supporter of the Trust. In September 2023, Sir Ivan organised a very successful Gala Dinner in memory of his daughter Rachel.

The event, held in London, was a celebration of Rachel’s amazing vitality and all that she accomplished in her 45 years before sadly passing away in 2013. We’re pleased to say that thanks to the incredible generosity of all those who attended, the event raised a wonderful £20,147, all in Rachel’s memory.

What makes this event particularly special is that it brings the money raised by Sir Ivan and his friends and family in Rachel’s memory to over £114,000.

Rachel, who followed in her father’s footsteps to become a successful criminal barrister, was an inspiration to many, including our very own Trustee, Michelle Shore, who has CF and is herself a successful lawyer. Michelle says:

Rachel was admitted to the same hospital ward as me once when I was an inpatient. I was in the second year of my law degree and it made me think if Rachel has CF and can be a barrister, I can be a solicitor.

Thank you to all those who donated, attended and organised such a fantastic evening, and thank you, of course, to Sir Ivan Lawrence for continuing Rachel’s incredible legacy. As Sir Ivan remarks, “the nearly impossible can turn out to be achievable.”

Thank you

A special thank you to all our incredible donors, supporters, fundraisers, challenge and event participants, and generous volunteers. We would not be able to achieve our work without your support.

For a summary of our income and expenditure for 2023/24, please download our Impact Report as a PDF.

Cystic Fibrosis Trust is the charity uniting people to stop cystic fibrosis. Our community will improve care, speak out, support each other and fund vital research as we race towards effective treatments for all.

We won’t stop until everyone can live without the limits of cystic fibrosis.