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.
In the weeks leading up to Christmas, people with cystic fibrosis (CF), their families, and the Cystic Fibrosis Trust will be sharing stories in the Daily Express as their official Christmas fundraising appeal. The Daily Express and their readers have been at the heart of the fight for access to precision medicines, and we are incredibly grateful and delighted to be their official charity. Here, Daily Express journalist Chris Riches shares with us his journey of crusading for the Trust and what this Christmas partnership means to him.
Rebecca Cosgriff is Registry Lead for the UK Cystic Fibrosis Registry. As she gets ready to address the European Cystic Fibrosis Society about developing a portal for people with CF to access their data, Rebecca takes time out to shed some light on how the Registry works, and where it’s headed.
