This year’s CF Week is all about how, as a community, we won’t stop: whether that’s researching for ground-breaking discoveries, supporting the physical and mental challenges of cystic fibrosis (CF), or ensuring everyone with CF has access to the best possible treatments. Here, Nubi shares her journey of starting on Kaftrio, exploring her personal experiences and views of the new triple combination therapy that was licensed last year.
This year’s CF Week is all about how, as a community, we won’t stop: whether that’s researching for ground-breaking discoveries, supporting the physical and mental challenges of cystic fibrosis (CF), or helping people with CF live a fulfilled life. Here, 29-year-old Rachel, aPsychological Wellbeing Practitioner and Teaching Fellow in Psychology at Ulster University, Northern Ireland, shares her experiences of growing up with CF, the importance of wellbeing and her tips for finding balance in life.
This study is being carried out to learn more about the information that wearable technology can give us on physical activity, cough frequency and sleep quality in people with cystic fibrosis (CF). All visits in this study are home based and will be conducted via telemedicine video conference via a mobile app. Study participation will last about 16 weeks: after a 4-week screening period with one remote study visit, there will be 12 further remote visits over the remaining 12-week study period. Throughout this study participants will continue their usual activity and treatment regime. The study involves the participant wearing...
As one community, we understand the importance of remembering and celebrating the lives of everyone with cystic fibrosis (CF), including those who are no longer with us. This CF Week and throughout June, share a memory, photo or message on our Dedication page, to remember and celebrate your loved one’s life. Here, Hollie shares her memories of her older sister Hannah, and how she pays tribute to her by supporting the Cystic Fibrosis Trust.
Blog -
Jessica Jones, Public Affairs and Policy Analyst
-
Published Date:
The Trust's Jessica Jones, Public Affairs and Policy Analyst, outlines information and advice around the effectiveness of the COVID-19 vaccine for people with cystic fibrosis (CF) who have had a transplant.
Blog -
Sangeeta Enright, Welfare & Rights Advisor
-
Published Date:
As coronavirus (COVID-19) restrictions lift across the UK, Sangeeta Enright, the Trust’s Welfare & Rights Advisor, discusses changes in the way disability benefits are assessed.
Last week over 400 delegates watched our online UK CF Conference. Topics covered new ways to treat the underlying cause of cystic fibrosis (CF), improving our understanding of CF related complications and why research into better treatments for lung infections is still a priority for CF research. Here we share some of our highlights.
