It has been a tough week for the cystic fibrosis community. There has been a flurry of intense activity, followed by numerous letters and press releases that have led many to the – understandable – conclusion that this is the end of the road for negotiations. Trust Chief Executive David Ramsden shares his assessment of where things stand.
Inspired by the Herculean efforts of Josh Llewellyn-Jones, Anna Bennett and a group of family and friends took part in the 24 Hours for CF challenge this August, raising over £3,500 for the Cystic Fibrosis Trust. Here, she tells us all about her incredible exercise journey, and how it helped her after her daughter's diagnosis.
Taking part in clinical trials isn’t just for adults – teens, children and even babies can take part in trials too. Our latest resources aim to introduce children and young people with cystic fibrosis (CF) to clinical trials, providing parents and trial coordinators with support to explain what trials are, what taking part in one might involve and how getting involved could help other children like them too.
Intrepid supporter aims to become the fifth woman to ski solo to the South Pole, and the first to ski back again, raising vital funds for the Cystic Fibrosis Trust.
On Friday, the Health and Social Care Committee announced an inquiry into the availability of Orkambi and other cystic fibrosis medicines on the NHS, which could open up discussions between Vertex, NHS England and NICE to public scrutiny. Following the announcement, we asked Policy and Evidence Manager Anna Evans to explain a bit of the background to the committee and what comes next. *Edited on 30 November 2018*
