October is Black History Month, and over the past few weeks and beyond we’ve been sharing stories to amplify the voices of Black people across the CF community. As an organisation we’re committed to being inclusive and relevant to the diverse ethnic groups affected by cystic fibrosis.
Following years of campaigning by the CF community, 2022 saw Kaftrio approved for 6 to 11 year olds across the UK. More than 1,500 children across the country stand to benefit from this drug, which can limit the damage CF does in those critical early years. Dave, dad to seven-year-old Ayda who has cystic fibrosis (CF), talks to us about the impact that Kaftrio has had on their lives, navigating life with CF, and their hopes for the future.
Shwetha is mum to Vihaan, 5, who has cystic fibrosis (CF). Here she tells us about Vihaan’s diagnosis, life with CF, and how they are celebrating Diwali this year.
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.
