Hi, I am one of 9,000 cystic fibrosis suffers, I have endstage cf and have just attended the Freeman hospital for an assessment for lung transplant. We are trying to get the drug, Kalydeco, available in the uk that has been manufactured by Vertex in America. At the moment the genes that have been tested will only help 360 of the cf population, but they are trialing the next gene. This is one of the most expensive drugs made and the NHS are dragging their feet prescribing it. We need to get the drug into parliament to be discussed and are running a petition, but need more help. There was a link recently that it could help other people with lung disorders, mentioned COPD in the future.
Could I ask you to sign our petition online, it only takes 30 seconds and please pass to any family, friends, workmates, etc who you think could help us. Second link is a little info from one of the mums on our closed facebook group.
If you need anymore info, please contact me on - cfchez @ azhz . co. uk (no spaces in address).
Cheryl - a fellow lung sufferer