Involvement news and opportunities

If you have any questions or are interested in taking part in any of the opportunities listed here, get in touch with the Involvement team at involvement@cysticfibrosis.org.uk.

Help shape the work of the Trust

  • Review our publications and resources 

    Your review may tell us which publications you have used, whether it met your needs with the right level of information, explanation and clear language and if there are any publications you would like to see added to the library.  The next scheduled reviews are: 

    • Stress incontinence in children with CF: We are looking for parents or carers of those under 12. 

     

    If you have a particular interest in reading and would like to review, comment and contribute to a specific resource or set of publications please email us

  • Create a physical activity training pack for people with CF  

    We’re looking for people of all ages to help the Trust develop a training pack, containing resources and guidance to help support people with CF to keep physically active. We’re not just looking for those who are interested in exercise – we're looking for a range of opinions and experience to help shape what this may look like. 

Other opportunities

  • Youth Advisory Group - Youth Activity Unlimited

    Are you aged between 12 and 18? Or are the parent/carer of a young person aged 12-18?

    The research team at Exeter University are looking for individuals with experience of CF to help shape a project looking at supporting young people to take part in physical activity through an online platform.

    The first meeting of the group will take place in early Dec. If you’re interested, please contact Georgia Jenkins at G.Jenkins2@exeter.ac.uk.

    Find out more about Youth Activity Unlimited

  • Help review the results of a diet and GI self-care research study for children and young people  

    Join a discussion with children, young people and parents in the CF community. We’ll be looking at the findings of a study about supporting children to gradually learn how to look after their diet and gut. This includes what support is needed and how it could be delivered in ways that are fun and interactive. 

    There will also be further opportunities in the near future to help develop resources and activities.  

    The focus group will take place on 20 January 2022. 

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