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Cystic Fibrosis Trust

Let's protest for Orkambi

Everything you need to know about the Cystic Fibrosis Trust’s day of national Orkambi protests on Monday 26 June.

On Monday 26 June we are holding a day of action for Orkambi. We are calling urgently on Orkambi’s manufacturer Vertex 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. Our message is clear: we need Orkambi now.

Take a look at our final information for the day.

Final information

Where are the protests?

In solidarity with the entire CF community, protesters from across the country will gather at Holyrood, Stormont, the Welsh Assembly and Downing Street from 1-4pm. We advise that, when planning your journey, you aim to arrive as early as possible.

If you have registered your interest in attending one of our national protest sites on our website, we will be emailing you an information pack with information on each venue and some helpful hints and tips for on the day.

Don’t worry if you haven’t registered your interest, you can still attend. Just check back here for further information closer to the time.

A link to all protest information will be available here shortly, but in the meantime you can download our protest location PDF for more details to help plan your journey.

Protest locations

What should I bring?

Although we will be supplying banners, placards, leaflets, whistles and cheer sticks on the day, they will be handed out on a first come, first served basis, and we encourage you to bring along your own banners, pictures and placards as well.

Protests will take place outside of government buildings, where there are strict rules against items touching or leaning against buildings, and particularly being tied to barriers or railings. Please bear this in mind when considering what you might bring on the day.

What if I can't attend a protest?

Unfortunately, due to the risk of cross-infection, people with CF will not be able to attend these protests, and we appreciate that others may also be unable to come along. However, we would like you to share your stories on social media using the hashtag #OrkambiNow.

Share why you need #OrkambiNow

We have created images for you to share across social media on the day and images for you to print out, fill in with your own stories and share.

Download our social media images:

Print off one of our posters, fill in your own story and then share on social media:

Follow the Orkambi protests

If you want to follow all the protest action from home, check out our #OrkambiNow Storify page. Storify will collect all #OrkambiNow pictures and videos from Facebook, Twitter and Instagram – allowing you to follow the protest in real time.

How can I lobby my local politician?

We have created a template letter that you can use to lobby your local politicians. We would encourage you to personalise your template letter as much as you can – politicians respond well to personal stories, so let them know what Orkambi could do for you, and why it’s so important that the treatment is made available without delay.

England

Find details of your MP and their email address on the parliament website.

Wales

Find details of your AM and their email address on the National Assembly of Wales website.

Scotland

Find details of your MSP and their email address on the Scottish Parliament website.

Northern Ireland

Find details of your MLA and their email address on the Northern Ireland Assembly website.

Help us keep track of which politicians have been contacted by copying us into your emails to your MPs, AMs, MLAs or MSPs, using the email address: publicaffairsteam@cysticfibrosis.org.uk.

What is Orkambi?

Orkambi is a precision medicine that treats the F508del mutation, the most common CF mutation, which affects around 40% of people with CF across the UK. It has been licensed for use by people with CF in the UK, but is not currently provided by the NHS to the people who need it, except in rare cases on compassionate grounds. Find out more about Orkambi.

For further information, please email our public affairs team

Research

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.

Discover more

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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