Information, Support and Programmes Advisory Groups

The Information, Support & Programmes team at Cystic Fibrosis Trust delivers services and resources to provide day to day help and support to people affected by cystic fibrosis in the UK. This includes our Helpline, welfare grants, welfare and benefits advice, information resources, our youth programme and the Work Forwards employment programme.

The ISP Advisory Groups are two groups of people from the CF community who provide feedback, thoughts and ideas to help us make sure that the information and support we develop and provide meets the needs of everyone with CF across the UK.

There is one group for adults who have cystic fibrosis, and another group for carers and family members of adults and children who have cystic fibrosis.  Both groups have online meetings 4 times a year, as well as regular opportunities to input into the development of our information and support services via email, online meetings and calls throughout the year.

Young people with CF can join our Youth Advisory Group to get involved with shaping our youth programme work. The Youth Advisory Group has members aged up to 25 so young people with CF aged 18-25 are welcome to join both groups if they want to.

It’s so important that people affected by cystic fibrosis have their say in the support we provide.  

  • About the groups

    These groups exist to make sure people affected by CF have their say in how we develop our information and support provision. There are lots of opportunities to get involved in other areas of the Trust’s work such as our campaigns, research, or clinical trials.

    • Each group has an online meeting 4 times a year which we ask all members to try to attend.
    • There will be lots of other opportunities to get involved via email, phone calls and online sessions.
    • You’ll hear updates from us about our information, support and programmes work.
  • Adults Advisory Groups

    You're welcome to join our Adults Advisory Group if you:

    • are aged 18 or over
    • have a diagnosis of cystic fibrosis
    • live in, and receive CF care in the UK.

    The Adults Advisory Group will play a key role in shaping our new employment programme, Work Forwards

    Aged under 18 but want to get involved? Find out more about our Youth Advisory Group! Aged 18-25? You can join whichever group you want - or both!

  • Carers and Family Members Advisory Group

    You're welcome to join our Carers and Family Members Advisory Group if you:

    • are aged 18 or over
    • live in the UK
    • cares for/about someone with cystic fibrosis: the group is open to parents, carers, spouses, partners, adult siblings, grandparents, extended family, close friends etc. Young siblings can get involved in our Youth Advisory Group.
  • How do I sign up or find out more?

    Drop us an email, let us know which group you’d like to join, and we’ll send you some more information and let you know how to join the groups.

Community involvement in trials

Share your knowledge and experience of CF and help shape future clinical trials.

Involvement news and opportunities

Find out more about what's been going on in the world of involvement.

Become a Youth Ambassador for research

Are you aged 11-18? Would you like to share your experience and ideas to help cystic fibrosis (CF) research?

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Information and support

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