Here, the UK CF Medical Association (UKCFMA) gives feedback on the monitoring of data collected through the UK CF Registry about the number of people with CF who have had coronavirus (COVID-19). It also advises how people with cystic fibrosis and their families can help minimise their risk of COVID-19.
Long-term data trends published in the UK Cystic Fibrosis Registry 2018 data report present a mixed picture overall, with drops in the prevalence of Pseudomonas and the proportion of people with CF on at least one course of IV antibiotics, but a widening gap in predicted survival between men and women.
On 26 April, the day that would have been the 40th Virgin Money London Marathon, the UK united in a monumental effort to support the nation’s charities by participating in ‘The 2.6 Challenge’. We’ve been blown away by your challenges, and we’re so grateful to you all for your creativity, enthusiasm and support during this difficult time. Here, we share just a few of the incredible stories we’ve seen of how the cystic fibrosis (CF) community are getting involved.
Fundraiser and chair of the Pembrokeshire branch of the Cystic Fibrosis Trust, Sybil Edwards, celebrated her 90th birthday in September. Not long after this milestone, she received the news that she had been included on the New Year Honours list and was to receive a British Empire Medal in recognition of a lifetime spent supporting people with CF and their families.
New research using the UK Cystic Fibrosis Registry has revealed for the first time a clearer picture of predicted survival both for those born with cystic fibrosis (CF) and for those already living with the condition.
Oli Rayner, an adult with cystic fibrosis and an active volunteer in CF research design and development, discusses how responses from the CF community to an online survey about Pseudomonas aeruginosa he carried out helped secure the funding for a major CF clinical trial, and led to the findings being published in a leading medical journal.
