As the National Institute for Health and Care Excellence (NICE) opts not to recommend the gene-specific medicine Orkambi to NHS England, while acknowledging the clinical benefits of the drug, the Cystic Fibrosis Trust has put forward a solution that could speed up access and evaluation.
Before Mallory Smith died age 25, she asked her mum Diane to publish her diaries, going back to her teens. When Diane looked through them after Mallory’s death she discovered a rich internal life that her daughter had recorded between hospital stays and periods of declining health. Diane has published Mallory’s diaries in a new book, ‘Salt In My Soul, An Unfinished Life’. We spoke to Diane, herself no stranger to writing about CF, about her daughter’s inspirational life and what it means to have her story published.
Schools across England are required to ensure that children with medical conditions are supported and kept safe, but not all of them know that they have a legal obligation to do so. The ‘Safe in School’ campaign is working to change this.
We spoke to Martin Rolfe, who has CF and CF-related diabetes, and Ryan Kelsey who is researching the complication, about how a recent visit to Ryan's lab helped Martin to understand his research and gave Ryan an insight into the life of people with cystic fibrosis.
Dr Ruth Keogh, who uses data from UK CF Registry and is an investigator on our ‘CF Epi-Net’ Cystic Fibrosis Trust-funded strategic research centre, last week received an award that celebrates the achievements of women in science
Last month Richard Atkins completed his second extreme race for the Cystic Fibrosis Trust by taking on a 100-mile run across a Mongolian lake with his wife Lily. Find out how he trained for this super-human feat and why he’ll do anything he can to support people with cystic fibrosis.
Cystic Fibrosis Trust supporters will be taking on the challenge of a lifetime at the Virgin Money London Marathon this weekend, raising vital funds to help beat cystic fibrosis for good.
