We were delighted that over 1,600 of you shared your views in stage one of the QuestionCF Priority Refresh survey earlier this year. The responses are currently being reviewed to create a long list of research questions, and a new survey will be released in mid-May in which people will be asked to rank the research questions in order of priority. Ahead of the launch of the second survey, our supporter Charlotte, who has CF, quizzed the Trust’s Director of Research Dr Lucy Allen on her priorities for CF research and hopes for the future.
New research into pregnancy rates among people with CF has found that an increasing number of women who are taking modulator therapies are becoming pregnant.
Richard is one of the 10,800 people in the UK living with cystic fibrosis (CF) –but Richard’s journey is slightly different from many, as he was only diagnosed with the condition five years ago, at the age of 37. Here, he tells us more about his CF journey, becoming a dad to his 'miracle baby', and his #CFTruths.
In January, we asked the CF community to tell us their thoughts on paying for prescription charges and to write to their MP ahead of a debate in the House of Commons on prescription charges and cystic fibrosis (CF). We received an amazing response and would like to thank everyone who has supported this campaign so far. In this blog, Grace Paget from our Policy and Public Affairs team, shares the latest updates on the campaign and how we have acted on your responses to our survey.
We interviewed Diane Shader Smith, mum to writer Mallory Smith, about her daughter’s legacy – and why she’s calling for better treatments in the fight against superbugs
Today the new energy price cap comes into force, which will see energy costs rise across the UK. For many within the CF community, this will add to the financial burden and exacerbate the cost-of-living pressures they are already experiencing.
As part of our #CFTruths campaign, we caught up with Matilda, 23, who shared her experience of the COVID-19 pandemic, the importance of raising awareness of cystic fibrosis, and her advice for other young people with CF.
