Today, the Trust launches Stopping the Clock, a campaign demanding fair and prompt access to precision medicines for people with cystic fibrosis by 2020, as part of its vision for a life unlimited by cystic fibrosis.
Precision medicines treat the underlying cause of cystic fibrosis and can have a huge impact on the day-to-day lives of people with the condition, but it can be difficult for the NHS to get data to assess how cost-effective they are. The Trust is working with the NHS, Government and pharmaceutical industry to use the data provided by the UK CF Registry to solve this problem and speed up access to precision medicines.
You can put your voice at the heart of Stopping the Clock by taking part in our forthcoming Digital Parliamentary Debate. What makes this unique is a Digital Discussion that the Trust and Parliament will be hosting, where you will be able to share your stories directly with Ian Austin MP. Ian will then use these powerful stories to represent the cystic fibrosis community to government at a special debate to be streamed online and live tweeted by the Trust and Parliament. The Trust will also be encouraging people to ask their MP to take part in the debate.
Darren O’Keefe, Public Affairs Manager at the Trust, said: “Stopping the Clock is a vital part of our fight for a life unlimited for people affected by cystic fibrosis, ensuring people can access effective transformational therapies as they become available.
“We are very excited to be working with the Parliament on this ground-breaking debate. This is a great opportunity for us to amplify the voice of the CF community, using their stories to persuade the government to grant access to life-changing precision treatments for people with cystic fibrosis.”
Keep an eye on the Stopping the Clock campaign page for more information, including the date of the Digital Discussion and Digital Debate (which is subject to a parliamentary ballot) and links to the live-stream video and Twitter feed for the event.
This news item was originally featured on our old website, dated 18/09/2015, and may have been edited since.