Tell your story


We need more public awareness of Cystic Fibrosis and our campaign for funding for precision medication on the NHS.

Local and national newspapers and tv news programs want to tell personal stories.

If your child or other family member has cystic fibrosis and you want to help the Orkambi and precision medicine campaign, you can easily contact your local newspaper and ask them to cover your personal story.

The recent proposal put forward by Vertex Pharmaceuticals to NHS England is a ‘pipeline’ deal.  This means that future drugs currently in development will be included in any deal negotiated.

So anybody with CF regardless of their mutation, can campaign and advocate for Orkambi and the pipeline deal.

Newspapers and online news

When approaching your local newspaper it is best to have the relevant information to hand:

  • A few paragraphs describing your family’s/your own personal experiences with cystic fibrosis.

  • An overview of the Orkambi campaign to give to the journalist (they may not have heard of the campaign).  This is a good link to email to them: UK Government debate access to life saving drug for people with Cystic Fibrosis

  • Remember that new developments are happening all the time so it might be a good idea to Google the latest press articles on Orkambi too.

  • A couple of good quality photos of your family and also perhaps some photos of the recent Orkambi protests. You can find some useful photos on our campaign resources page.

  • You could also email them the link to the ‘We Need Orkambi Now’ video and ask them to share that online.  (Most newspapers will also do an online link to your story so don’t forget to share this on social media using #OrkambiNow and #Orkambi)

  • If a journalist needs any further information you can give them the Cystic Fibrosis Trust’s Press Office details:




If you are a confident speaker, you could also contact your local radio station. There are two options here:

  • Your story might be featured on a news bulletin, which usually involves a phone interview (or you might be asked to pop into the studio to pre-record an interview)

  • There might also be a suitable programme that will invite you in to talk about cystic fibrosis and the fight for Orkambi and other precision medicines – this is likely to be live, not pre-recorded.

Local connections

Remember, as well as local newspapers (if there is more than one paper you can approach both of them), there are often local magazines and even parish magazines that might consider publishing an article on the Orkambi/precision medicine campaign, with your story as the local connection.


All publicity helps, however small it might seem.

©2018 CF Support Group.