Cystic Fibrosis Guernsey would like to express our heart felt thanks for much loved Mum, Gran & Friend Jean Ferbrache and the donations in her memory. Jean passed away on 24th January aged 83.
Thanks to CF Channel Islands I recently attended my first Cystic Fibrosis Conference. I am a mum to a daughter with CF and a Social Worker for young adults with physical and or sensory disabilities. Ironically I would be my own daughter’s social worker and having worked in the past with CF patients and her [...]
Jemma from Jersey and Julie from Guernsey attended the UKCFC 2018 in Birmingham to represent the Channel Islands and report back on the latest developments and news for local families affected by CF. Jemma writes for us below. "This time last week I was heading off for the CF Conference in Birmingham. I haven’t been [...]
Jeremy Hunt, Secretary of State for Health and Social Care today called on drug manufacturer Vertex to be transparent on its pricing for the precision medicine Orkambi, and agreed to explore avenues for ensuring quicker access to medicine, in a session of oral questions on health, in Parliament today. https://www.cysticfibrosis.org.uk/news/health-secretary-urges-action-over-orkambi-pricing-and-access-to-medicine
Channel Island CF families please take note of this wonderful opportunity, in memory of Kate Hennessy. Kate’s Adventure Fund awards financial grants to Adults aged between 18-30, who suffer with cystic fibrosis. This will enable them to take part in an amazing activity or challenge while their health still allows them to. The fund is [...]
Jersey Mum Jemma is in the final stages of her preparation to run the Brighton marathon this weekend closely followed by the London marathon the following weekend, raising money for and awareness of Cystic Fibrosis. Jemma says, "As a Mum I often feel totally helpless as I watch and have watched Jess’s health deteriorate with [...]
Cystic Fibrosis Channel Islands wants a potentially life changing drug made available across the Channel Islands, but Orkambi is not available on the NHS - Watch the interview with Courtney Read, a woman in Guernsey with CF, who is pinning her hopes on the drug being funded locally by clicking on the link to our [...]
Orkambi, made by Vertex Pharmaceuticals, is quite literally a life changing drug for the thousands of UK and Channel Island CF sufferers with the deltaF508 gene mutation. Along with Ivacaftor, it's the first of a new line of precision drugs that targets the cause of CF rather than just reducing symptoms. New precision drugs like [...]
CF Guernsey recently sponsored the presence of Rosemary Kealy, the Islands only adult respiratory nurse specialist, at the most recent CF Conference to be held in London. Her report follows. Recent advances in the management of Cystic Fibrosis - Effective Approaches for the Multidisciplinary Team Dr Andrew Jones discussed cystic fibrosis transmembrane conductance regulator (CFTR) modulators [...]
