Search

Help shape guidelines in this new CFTR modulator era

The paediatric research team in the Royal Brompton Hospital, London, are investigating the impact of CFTR modulators on children exposed to the medication during pregnancy and breast feeding. Although our current understanding is that it appears to be safe, guidelines are not yet available on how to follow up this group of babies to ensure they do remain unaffected. 

Help us understand the reality of access to PERT in 2025

Share your experiences of accessing Pancreatic Enzyme Replacement Therapy (PERT) by taking part in our survey.

Inside the lab with James: "I’d rather watch a 90-minute experiment than a game of football"

James is a second year, Trust-funded PhD student based at Bristol University. In the latest of our ‘Inside the lab’ series, he tells us what his research is about and what a typical day looks like for him.

May Media Roundup

This month, lots of our amazing supporters donated to our Spring Appeal and do their own incredible challenges to fundraise for the Trust.

Conference round up: From germs and genes to gynaecology!

Earlier this month, thousands of people who work in CF care and research attended the European CF Conference in Milan. It was an opportunity to learn about new CF research and share the latest findings on how to improve the lives of everyone with the condition. Here we share some of the delegates highlights.

"Developments in medicines and treatments...allowed me more time instead to think about who I want to be" - Will's story

We spoke to Will about working in animation, meeting their wife, and how modulators have given them more headspace and time to think about who they want to be.

UK Government publishes Universal Credit and Personal Independence Payment Bill

Yesterday, the Government introduced a bill to make changes to the benefits system. We are concerned that the proposed changes will reduce vital support for some people with CF. Find out more about how this could affect you – and how you can have your say. 

Cystic Fibrosis Trust responds to Sickle Cell: Comparative Review to Inform Policy

David Ramsden, Chief Executive of Cystic Fibrosis Trust, said: “Cystic fibrosis is a life-long and life-limiting condition without a cure, but real progress has been made in care and treatment over the last few years, driven by specialised care from multidisciplinary teams and high-quality research. It’s vital that conditions, like sickle cell disease, receive the resources needed for research, care, and treatment to ensure everyone can live a life unlimited by their condition.”

"I’m not thinking about where I could be limited by CF. For the first time, challenges are logistical, rather than health-based" - Declan's story

We spoke to Declan about running an ultra-marathon, being a science teacher, and changes in his life since taking Kaftrio