We provide a voice for people affected by cystic fibrosis through our work with clinicians, NHS commissioners and politicians at all of UK parliaments and assemblies to drive up standards of care and raise awareness of cystic fibrosis issues.
Stopping the Clock: campaign for access to precision medicines
We are demanding fair access to life-changing precision medicines for everyone with cystic fibrosis by 2020. Keep an eye on the campaign page for updates, including petitions and other ways of getting involved. Find out more about our Stopping the Clock campaign.
Hope for More: campaigning for a national lung allocation system
We made 12 recommendations in a 2014 report with an eye to increasing the number of successful transplants for people with CF and improve the quality of care they receive while they are going through the transplant process. Find out more about our Hope for More campaign.
Raise an issue with your local MP
From access to medicines, to Personal Independence Payments (PIP), your MP is your gateway to the decision-makers in Government. With a relatively small number of people with cystic fibrosis in the population, it can be hard to get the attention the condition deserves. However, this all changes when your MP is contacted by you - one of the constituents they are elected to represent - to share your own story.
There are many ways to contact your MP, including via the Trust as a campaign partner (see above), or via an e-action. Find out who your MP is - if you need any further support in contacting them, our Public Affairs team will be happy to help!
- Start with an email or letter to your MP.
- Keep it simple and to-the-point: what is the issue you wish to raise?
- Include your name and address, so they know you live in their constituency.
- A personal story is best! Explain why the issue is relevant to you.
- Follow up with a face-to-face meeting if you think it will help - this can be done at a local 'MP surgery'.
- Link with the Trust's campaigns via our Public Affairs team - we'd love to offer you guidance, information and support.