In Northern Ireland a scheme co-funded by the Cystic Fibrosis Trust has trained advisors at Advice Space (formerly Citizens Advice Belfast) to offer specialist support to people living with cystic fibrosis. As part of CF Week 2019, Margaret, a specialist CF social worker from City Hospital, Belfast, and some of those who have benefitted from the service, like 28-year-old Kerry, share their experiences of navigating the health and benefits system with CF, and the impact this scheme has had.
The fight continues to gain access to the cystic fibrosis drugs Orkambi and Symkevi, as well as other treatments in the pipeline. Here we take a look at the current CFTR modulator drug pipeline, to see what the future might hold.
NHS England has today announced that people with cystic fibrosis (CF) living in England who stand to benefit from life-saving drugs Orkambi and Symkevi will receive them as part of a two-year managed access agreement with the manufacturer, Vertex Pharmaceuticals.
Find out how cystic fibrosis affects bone health and learn about the different types of bone disease that people with CF can experience. We also explore how low bone mineral density can be treated.
Lynsey Beswick, Public Affairs Manager at Cystic Fibrosis Trust, gives an update on the fight for access to medicines for people with cystic fibrosis (CF) in Scotland. Read on to find out more about the Peer Approved Clinical System and an upcoming Ultra Orphan Status decision.
At the end of a busy week of activity in the fight to stop the clock on cystic fibrosis, and on the eve of another, our Chief Executive, David Ramsden, shares his thoughts on where things stand.
