Join our CF Patient Advisory Group

Do you have CF and an interest in research? Join our new CF Patient Advisory Group today and you’ll ensure our work is led by the patient voice.

We know that

·       Cystic Fibrosis (CF) affects over 11,000 people in the UK and nearly 200,000 people worldwide

·       Around a quarter of adults with CF still have ‘exacerbations’ or ‘flare-ups’ that need hospital treatment each year.

·       There is currently no treatment to prevent exacerbations.

The work of the PULSE-CF Hub is working to change that. We’re working to improve our understanding of exacerbations, explore why they happen and develop treatments to prevent exacerbations in the future.

We’d like you to join our team as a member of our new CF Patient Advisory Group and help make our goals a reality.

What is the PULSE-CF Patient Advisory Group?

We’re looking for people with personal experience of CF to join our Patient Advisory Group and shape the work we do around CF exacerbations.

By becoming a member, you’ll:

·       Use your experiences to shape our different research studies on exacerbations

·       Help us create information about our work that is easy to understand

·       Brainstorm ideas with us on how we can engage with CF patients, their families, and the public in conversations about exacerbations and our work.

·       Work with us to help bring the research to life by sharing patient stories

·       Keep our work focused on what really matters around CF exacerbations

You won’t need to have any experience of research to get involved. All we ask is that you have an interest in CF research around exacerbations and are happy to share your ideas and experiences in group settings.  

We’ll meet around three times a year, over Zoom, and hope to have up to 15 members join the group. As a member, you’ll be offered:

·       £27.50 an hour payment and £5 remote working allowance for online meetings

·       Carer and/or childcare costs as needed

·       Personalised support and training and required

Read our ‘CF Patient Advisory Group Overview’ for more information about the group and how we’ll be working together on our research into exacerbations.

How to get involved

https://survey.zohopublic.eu/zs/2JByeC

Complete our online sign-up form by 5.00pm on Sunday 29th March 2026.

If you have any questions or would like to find out more about the role, please do email Sinduja (sinduja.manohar@mft.nhs.uk) and she’d be happy to help.

Get involved today and make a difference for CF patients in the future.