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Campaigning in your region

Take a look at how we're campaigning for access to precision medicines in England, Northern Ireland, Scotland and Wales, and find out how you can share your voice.

England
Northern Ireland
Scotland
Wales

England

On Thursday 24 October, NHS England has announced that people with cystic fibrosis (CF) living in England who stand to benefit from life-saving drugs Orkambi and Symkevi will receive them as part of a two-year managed access agreement with the manufacturer, Vertex Pharmaceuticals. Find out more about this deal, or look at our frequently asked questions.

Northern Ireland

The Department of Health in Northern Ireland confirmed its intention to complete a deal with Vertex Pharmaceuticals to make life-saving drugs Orkambi and Symkevi available to eligible people with cystic fibrosis (CF) living in Northern Ireland. Richard Pengelly, Permanent Secretary of the Department of Health in Northern Ireland, announced on 12 November that a formal agreement with Vertex Pharmaceuticals will be finalised and signed in the very near future, and that clinicians will be able to begin prescribing the drugs to the first eligible patients within the next few weeks. 

Scotland

On 12 September 2019, the Scottish Government reached an agreement with Vertex with support from the UK CF Registry and announced a five-year deal that will see access to Orkambi and Symkevi for everyone with cystic fibrosis in Scotland who stand to benefit from the drugs.

Wales

On 13 November, the Welsh Minister for Health and Social Services, Vaughan Gething, announced that the Welsh Government has agreed terms in principle with Vertex Pharmaceuticals to make Orkambi and Symkevi available alongside Kalydeco in Wales. We await further confirmation on the details of this deal but understand that the Government aims to have it finalised by the end of November and intends to begin to roll out access where clinically appropriate to eligible patients the following month.



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Research we're funding

The Trust is committed to funding and supporting cutting-edge research to find new and better treatments for cystic fibrosis. Take a look at some of that work and the progress that is being made.

What is cystic fibrosis?

Find out more about cystic fibrosis, its diagnosis and how it is treated, as well as useful links to our publications and other organisations who can help.

More information

If you would like to find out more about any of our campaigns, publications or anything else, get in touch and we'll be happy to help.