Our ambition is to make sure that everyone with cystic fibrosis (CF) can look forward to a life unlimited by the condition. We want to ensure that the CF community receives the best care, the right treatments, and the right support – so we have made our concerns about disability benefits heard and made sure your voice is at the heart of that.
For people living with rare diseases like cystic fibrosis (CF), the impact of the COVID-19 pandemic has been far reaching, with both positive and negative outcomes. Dr Jamie Duckers, Consultant in CF and Respiratory Medicine at Cardiff and Vale University Health Board, talks about how the CF community has been affected by the pandemic.
Ryan has cystic fibrosis (CF) and helps run gaming nights for children with CF as part of our Children in Need-funded youth programme. He was recently surprised by The One Show’s new fundraising challenge for BBC Children in Need – the Surprise Squad – to celebrate all of his hard work for our charity.
Developing CF-related diabetes (CFRD) is one of the most common complications of cystic fibrosis. In fact, one in three adults with CF in the UK is currently living with the condition. Following World Diabetes Day last week, we chatted to specialist CF dietitian Julie Al-Siaidi about the challenges of living with and treating CFRD, and we hear from the CF community about your top tips for managing it. Thank you to everybody who shared their advice!
Last week the North American Cystic Fibrosis Conference (NACFC) took place online. It is the biggest CF conference in the world, covering everything from better ways to manage symptoms and treatments for CF, to updates on the treatment pipeline and the latest in lab research to develop new treatments. Belinda Cupid, Senior Impact Adviser at the Trust, shares her top five highlights from the Conference.