UK Cystic Fibrosis Registry Steering Committee Lay Member
Cystic Fibrosis Trust
Cystic Fibrosis Trust are seeking individuals with lived experience of Cystic Fibrosis (CF) or caregivers who can bring patient-centred insight to the Registry’s development and use. The role is part-time and home-based. You will share your lived experience and insights of Cystic Fibrosis (CF) on behalf of the CF community to inform our workstreams and priorities. Apply by 10 May 2026.
Cystic Fibrosis Trust are seeking individuals with lived experience of cystic fibrosis (CF) and caregivers to people with CF to bring patient-centred insight to their Registry’s development and use. This is a voluntary role (unpaid), but reasonable expenses can be claimed for travel to attend meetings in person, if required. The role is part-time and home based. Registry Steering Committee (RSC) membership term is three years. The RSC meets quarterly and you must be able to commit to attend at least two meetings per year. Key responsibilities: You will share your lived experience and insights of Cystic Fibrosis (CF) on behalf of the CF community to inform our workstreams and priorities. You will confidently articulate views in meetings alongside diverse professionals. You will listen to and respectfully consider different perspectives. You'll collaborate to ensure the voices of people affected by CF are taken into account and shape decision-making. You will need to review committee papers and documents outside meetings as required. There is also an option to join the Registry's Data Review Group if you wish. This group meets online every six weeks and members provide Registry data request approval. How to apply: - Download our Recruitment Pack and Terms of Reference to learn more about the role and what we’re looking for. - Prepare a CV and a cover letter (a max of 2 A4 pages) outlining your connection to Cystic Fibrosis (either as a person living with CF or as their carer/parent) and telling us why you want to join the RSC and what perspectives you would bring. Important Dates: Closing date for applications: Sunday 10 May 2026
Advice, Information & Support,Trusteeships & Committees
Basic IT skills - internet & email, Evaluating & Reviewing, Organising & Planning, Reading & Writing
Who we’re looking for: • People living with Cystic Fibrosis or carers/parents of someone with CF. • Able to communicate clearly and participate in multi-disciplinary meetings. • Respectful, open-minded and collaborative team players. • Able to commit time to meeting preparation and attendance. • Committed to inclusivity and equal access to health and care services. We particularly encourage applications from young people aged 18–25 living with CF.
Why join us? • Make a meaningful impact on the lives of people affected by CF. • Contribute to strategic direction for CF care and research. • Early insight into upcoming Registry developments and research opportunities. • Develop skills in application review, public speaking, governance and strategic planning. Together we’re uniting for a life unlimited for people living with CF. Add your experience and voice to the Registry Steering Committee and help steer the future of CF care and research. Your experience. Your voice. Your impact.
Term and commitment: three years. The committee meets quarterly - you must commit to attend at least two meetings per year.
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