The UK CF Registry will be taking a pivotal role in monitoring the effectiveness of Orkambi and Symkevi once they are in the hands of people with cystic fibrosis (CF) across the country. Here, Rebecca Cosgriff, Director of Data and Quality Improvement at the Cystic Fibrosis Trust, explains how the Registry will help bodies across the UK to evaluate the efficiency of these drugs, and future therapies.
Our latest edition of ‘CF Life’ magazine featured William Marler, who is one of several podcasters sharing the everyday experiences of people living with cystic fibrosis. We spoke to William and a fellow podcaster, Tiff, about why they got into podcasting and the importance of providing a voice to the CF community.
The James Lind Alliance Priority Setting Partnership, supported by £15,000 from the Cystic Fibrosis Trust’s Venture and Innovation Awards (VIAs), and co-funded by the University of Nottingham and Nottingham University Hospital Charities, is launching the second step in an ongoing project to allow people in the cystic fibrosis community to decide on the top ten priorities for research into the condition.
Today marks the first meeting of the committee tasked with monitoring interim access of Orkambi and Symkevi in England. Rebecca Cosgriff, Director of Data and Quality Improvement at the Cystic Fibrosis Trust, explains how the UK CF Registry will generate the evidence needed to measure the effect of these drugs on people with cystic fibrosis (CF) who are receiving them across the UK.
Since his daughter was diagnosed with cystic fibrosis (CF) in 1992, Liam McHugh has raised over £270,000 and covered around 180,000 miles in support of the Cystic Fibrosis Trust. On 2 October, Liam was deservedly named Northern Ireland’s Pride of Britain. In this feature, Liam shares the moments in his life that led to this moment, and how his tireless campaigning and fundraising efforts have brought life-changing breakthroughs to the CF community.
The Cystic Fibrosis Trust is looking for volunteers to feature in a new video promoting the importance of gifts given in the wills of generous supporters.
Team CF Superheroes Ross and Kelly Payne have completed 60 marathons between them, raising thousands of pounds for the Trust to help their four-year old son Jax, who has cystic fibrosis (CF). They shared with us what life is like as a family with CF, their marathon journey, and why being a Team CF Superhero could mean their son gets to live a life unlimited.