We tackle issues that matter – access to medicines, fairer transplant processes and equal care for all – and the more people join in, the louder our voice will be. Together, we have the power to create a brighter future where people with cystic fibrosis can live a life unlimited – so let’s speak up and make it happen, sooner.
Our campaigns have called for better facilities for people with cystic fibrosis at King’s College Hospital, a national lung allocation system and access to cost-effective travel insurance and free oxygen on flights. Now, we are campaigning for fairer access to precision medicines that are in the pipeline, Stopping the Clock on cystic fibrosis.
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On Monday 26 June we held a day of protests across the UK and called on Vertex, the NHS and the governments of England, Scotland, Wales and Northern Ireland to speed up their negotiations and reach an agreement on Orkambi. Thousands of people living with cystic fibrosis (CF) have simply been waiting too long for this vital drug, and we think this is unacceptable.
Read about our protests
Take a look at our Stopping the Clock campaign, where we are calling for fairer access to precision medicines.
Find out more about the different ways you can get involved in our campaigning work.
Take a look at some of the blogs about our campaigns, including one from Ed Owen, Chief Executive of the Trust, about the importance of our Stopping the Clock campaign and access to precision medicines for everyone in the CF community (February 2016); one by Lynsey Beswick, Public Affairs Officer, about her meeting with NICE regarding its appraisal of Orkambi (March 2016); and Lynsey's follow-up to this meeting (April 2016).
- King's campaign: Enough is enough! A campaign around the delayed development of a much-needed new CF ward at King's College Adult CF Centre.
- Keep Wythenshawe Special! Highlighting the implications of the relocation of specialised services for the adult CF unit in Manchester following a Healthier Together initiative across Greater Manchester. Over 2,500 people from the CF community signed a petition in support of the campaign.
- Hope for more. Campaigning for a national lung allocation system.
- Access to medications. Calling for an end to the postcost lottery, and improved access to treatments.
- MP visits to CF centres in England. Around 30 MP's from across all parties were invited to find out more about CF care and hear about the key issues affecting people with cystic fibrosis.
- Heart disease review and cystic fibrosis. Fighting the closure of specialist heart units and highlighting the implications of the closure for CF services.
Campaign coalitions we belong to