There can be the misconception that CF is a condition that only affects white people, but figures from our recent Registry Report reveal about 6% of the UK’s cystic fibrosis population are from a Black, Asian or minority ethnic background. Throughout Black History Month and beyond, we’ll be sharing stories from the Black CF community about their experiences and how it feels to be a minority within a minority group. Here, Cydney tells us about the racism she has faced in the workplace and how it has affected her as someone with cystic fibrosis. A big thank you to Cydney for sharing her story.
Melissa is mum to Thèadora, 9, and lives in Wales. Thèadora was diagnosed with CF as a baby. Here, Melissa tells us about the family’s CF journey and the financial burden it can bring.
Poppy lives in Wales with her sausage dog Willie. Poppy is an artist and a former winner of our Helen Barrett Bright Ideas Award. She received a double lung transplant in 2015 – and says it has “completely changed her life”. To mark Organ Donation Week, we’re sharing a poem Poppy has written about her transplant experience.
Ahead of the emergency budget this week, we have written to the new Chancellor, Kwasi Kwarteng, asking the Government to take urgent steps to address the needs of people with cystic fibrosis this winter.
To mark Organ Donation Week (26 September - 2 October), Vicky, who lives with CF and had a double lung transplant over 20 years ago, writes a letter to her donor family.
Cystic Fibrosis Trust recently submitted a response to the Health and Social Care Select Committee’s inquiry ‘Integrated Care Systems: autonomy and accountability’, and to NHS England’s ask for responses on its published roadmap. This was done as part of our continued influencing on NHS CF service design and delivery, and our work as part of the Specialised Healthcare Alliance.
As part of QuestionCF, we’re asking you to rank your top 10 research priorities in a new survey. Here we explain the background to QuestionCF, what the survey will ask you to do, who can take part and what will happen to the results.