As we work towards making our information resources as useful and relevant as possible for everyone with cystic fibrosis today, we’ve updated our consensus document on The Management of Cystic Fibrosis Diabetes. We published the new guidance at the end of 2022. We’re really grateful for all the help we’ve had from people in the CF community and healthcare professionals that look after people with CF. We hear from Paula Dyce, the Chair of the Working Group for the Diabetes consensus document, to find out more about some of the important changes to the document.
Our Chief Executive David Ramsden writes about our latest research on the cost of living with cystic fibrosis, and how we are providing vital support to those who need it most in these challenging times.
We are a group of young people aged 14-25 who are living with CF or have a close family connection to someone who is. We are all part of the Trust's Youth Advisory Group (YAG), which is a way for young people to influence work at the Trust and make sure that our voice is heard loud and clear. We chat, share, laugh and cough our way through our monthly online meetings, and get to know amazing people along the way. Here, five YAG members share why we got involved and chat pets, superpowers and weird food!
In a YouGov poll carried out last year, we discovered that 86% of the general public do not know that people with CF cannot meet in person due to the risk of passing on potentially deadly infections to each other. In this blog, Sarah, 37, writes about how the risk of cross-infection affects her day-to-day life and the support she’s found from the CF community.
Part of the NHS deals to grant access to modulator therapies included the agreement that data would be collected on their effectiveness. With the period of data collection ending in 2023, NICE is soon to embark on an appraisal of modulator therapies. Cystic Fibrosis Trust has provided feedback to the NICE consultation on how to approach this appraisal.
From the information you read on our website, to the publications you may be given by your CF team, the information and support team here at the Trust produces a wide range of free and balanced information resources on all aspects of life with cystic fibrosis. As well as helping the CF community to make informed decisions, we also produce consensus documents for health professionals working in CF care. Ahead of the publication of new consensus documents on CF diabetes (CFD), CF laboratory standards and pharmacy standards, Holly from our information team shares more about how these documents are produced and why they are so important.
Find out more about the research the Cystic Fibrosis Trust is funding into correcting premature stop codon mutations in cystic fibrosis (CF) using stem cells.
