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.
New precision medicine tezacaftor-ivacaftor has completed clinical trials, but before any decisions on its use in the NHS are made, it must be granted a license for sale by the European Medicines Agency, which is due to be rubberstamped this year. We are launching a new survey to help us represent you as the case for using the drug in the NHS is evaluated by health watchdogs. Nick Medhurst, Head of Policy at the Cystic Fibrosis Trust, explains how the information you share will help us to fight for you.
