Our history
For 60 years we've worked together, sharing moments of frustration, despair and hope, overcoming challenges, and celebrating breakthroughs.
And we won't stop until CF does. With your support, we can get closer to a life unlimited.
Learn more about the history of the Trust since we were formed 60 years ago.
1964
The Cystic Fibrosis Research Trust is formed on the initiative of John Panchaud, whose daughter Caroline had CF. Their inaugural meeting is held in London on 20 February 1964.
1965
The first adult CF clinic is set up in the UK at the Royal Brompton Hospital in London.
1968
HRH Princess Alexandra becomes Patron of the Trust, remaining so until 2014.
1971
CF Week, Cystic Fibrosis Trust's annual awareness and fundraising week, is launched. Over 5,000 people attend the very first event in Trafalgar Square.
1980
Research funded by the Trust refines the newborn screening test and in January 1980 the world’s first regional screening programme is established in East Anglia.
In 1980, Polly was the first baby in the world to be diagnosed with CF through an established newborn screening programme at Ipswich Hospital. Watch her tell her story.
1983
The Trust begins funding the first specialist CF doctors and nurses in the UK, through clinical support and improvement grants. These experienced paediatric registrars and nurses, devoted entirely to the care of CF patients, are one of the major factors in the successful development of the new CF centres.
At this point, there are now CF centres in most large cities, usually attached to teaching hospitals, which results in huge improvements in treatment.
1985
Researchers funded by the Trust discover a marker very close to the CF gene. They go on to isolate a fragment of DNA close to the CF gene.
1989
The CF gene is found.
The Trust launches its support service to provide advice, information, telephone counselling, and welfare grants to families in need.
1992
The Cystic Fibrosis Research Trust becomes Cystic Fibrosis Trust to reflect its involvement in clinical care and support as well as research.
The first UK CF patient database is set up by the University of Dundee to audit the health of people with CF in Scotland. Funded by the Trust, this database is a precursor to the UK CF Registry.
1996
The Trust publishes its first consensus document, Clinical Guidelines for Cystic Fibrosis Care, in collaboration with the British Paediatric Association and British Thoracic society, with the aim of standardising care across UK and providing clinicians and patients with guidelines for best practice.
1997
Wool from Dolly the Sheep, the sheep cloned at the Roslin Institute in Edinburgh, is donated to the Trust. The Trust launches the ‘Do a Design for Dolly’ jumper-designing competition and in March 1998 12-year-old Holly Wharton is announced the winner. Her design was made from Dolly’s wool and is now on display at the Science Museum in London.
2001
Following successful campaigning by the Trust, the government rolls out newborn screening for CF for all babies born in England.
2001
The UK Gene Therapy Consortium is formed, offering funding to three UK groups working on gene therapy if they combine their efforts.
2008
The CF Foundation and Vertex show it is possible to treat the root cause of CF. During phase 2 studies, participants, all of whom carried the G551D mutation, show unprecedented improvements in key signs of the disease.
2012
The Trust awards its first strategic research centre (SRC) grants to multidisciplinary teams working together to solve important questions in CF research, such as better treatments for P. aeruginosa and M. abscessus lung infections.
2014
HRH Prince Charles becomes Patron of the Trust, a position he continues to hold after he accedes to the throne in 2022.
2015
The Trust launches its youth programme, offering free online events and creating the Youth Advisory Group (YAG).
2017
The top 10 research priorities, chosen by the CF community and clinicians using the James Lind Alliance process, are announced. The top priority at the time is to find effective ways of simplifying the treatment burden of people with CF.
The Trust launches the Clinical Trials Accelerator Platform (CTAP), a UK-wide initiative bringing together NHS cystic fibrosis (CF) centres to support people with CF to access and participate in CF clinical trials.
2018
The UK Cystic Fibrosis Innovation Hub, a groundbreaking partnership between Cystic Fibrosis Trust and the University of Cambridge, is launched. Its aim is to harness multidisciplinary, world-class research to accelerate progress towards preventing lung damage and the subsequent loss of lung function in people with CF.
2019
Over 200 members of the CF community are joined by MPs for the Trust's demonstration for life-saving drugs in Parliament Square.
2020
Kaftrio is licenced by the European Commission for people over 12, with access having previously been agreed in England, Scotland, Wales and Northern Ireland.
The median age of survival surpasses 50 for the first time.
2023
The Trust launches Work Forwards, the first ever specialist employment and careers support programme for people with CF.
2024
Cystic Fibrosis Trust turns 60.
Kaftrio, Orkambi and Symkevi have been permanently approved on the NHS in England, Wales, Scotland and Northern Ireland. There is also a commitment by all parties to work together towards rapid access for all eligible patients for future treatments for CF.
Since 1964
We won't stop until CF does. With your support, we can get closer to a life unlimited.