Hi everyone, my name is Rosie, I am 15 years old and have CF. Today I want to talk to you about why information on CF needs to be updated across the school curriculum.
Jack Kinsey, an interior designer from Norfolk, appeared in series four of BBC Interior Design Masters, where he was awarded second place. Here he talks more about his passion for design, his time on TV, and his life with CF.
We want to make sure every person with CF, regardless of their background or situation, has opportunities to help design and participate in clinical trials to access potentially life-changing new treatments, and that clinical trials are designed in ways that are considerate and supportive of the diversity of the CF community.
Our Work Forwards programme officially launched in February this year. Set up to respond to the evolving employment needs of the CF community, Work Forwards offers support with various work-related topics, from updating your CV to telling your employer that you have CF.
There is a difference between the improvements seen in clinical trials (known as 'efficacy’) and improvements in everyday use (known as ‘effectiveness’) for Ivacaftor, the first modulator that became available for people with CF. A 10.6% improvement in lung function was seen in clinical trials, whereas only a 6.0% improvement was seen in the real world after Ivacaftor became more widely available to the CF community. Other data showed that the prescription of inhaled therapies (e.g. inhaled mucolytics and antibiotics) dropped following the availability of Ivacaftor in the UK. There is a possibility that this lower use of inhaled therapies...
