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Cystic Fibrosis Trust

Let's protest for Orkambi

Thank you for taking part in our Orkambi protests across the UK on Monday 26 June.

On Monday 26 June we held a day of action for Orkambi calling urgently on the drug’s manufacturer Vertex, the NHS and governments across the UK to agree on an affordable price that can make the life-changing drug immediately available to those who so desperately need it.

The cystic fibrosis (CF) community protested outside of Holyrood, Stormont, the Welsh Assembly and Downing Street, while hundreds of people with CF and supporters took part at home by sharing their stories on social media using the hashtag #OrkambiNow. Read some of the stories shared by the community online.

Trust Chief Executive David Ramsden wrote to Vertex and the NHS in all four UK nations appealing to them to reach an agreement on pricing for Orkambi and end the wait. Read the responses from NHS Scotland, NHS Wales, the HSC Board in Northern Ireland and Vertex Pharmaceuticals.

Read the letters

Protest responses

We will be sharing the responses from NHS directors and Vertex as and when we receive them – please continue to check back for further developments.

Supportive parliamentarians 

Download a list of all the parliamentarians across the UK who have supported our Orkambi campaign.

Keep sharing your stories

Keep sharing why you need #OrkambiNow by posting your own stories on Facebook or tweeting them to us @CFTrust.


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.

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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.

Read on

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.

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