UK CF Registry Steering Committee Members - Lay members (Volunteer role, unpaid)
| Posting date: | 16 April 2026 |
|---|---|
| Salary: | Not specified |
| Additional salary information: | This is a voluntary role (unpaid), but reasonable expenses can be claimed for travel to attend meetings in person if required. |
| Hours: | Part time |
| Closing date: | 16 May 2026 |
| Location: | EC3A 5EB |
| Remote working: | Fully remote |
| Company: | Cystic Fibrosis Trust |
| Job type: | Contract |
| Job reference: | Volunteer - Steering Committee Member - Lay members |
Summary
About us
Cystic Fibrosis Trust is the UK’s leading charity dedicated to uniting for a life unlimited for everyone with CF – one of the most common life-limiting genetic conditions.
The UK Cystic Fibrosis (CF) Registry is a web-based database that collects health and demographic data for people with CF across the UK. The Registry Steering Committee (RSC) is an independent advisory committee reporting to the Trust Board and responsible for recommending the strategic direction of the Registry and includes clinicians, commissioners, statisticians, Trust staff, and people with lived experience.
About the role
We are seeking individuals with lived experience of cystic fibrosis and caregivers who will bring patient-centred insight to the Registry’s development and use as a member of the RSC.
This is a voluntary role (unpaid), but reasonable expenses can be claimed for travel to attend meetings in person if required.
This role is part time and home based. This is a UK based role and candidates need to be based in the UK.
Term and commitment
RSC membership term: three years (minimum one term).
RSC meets quarterly (commitment to attend at least two meetings per year).
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. We also encourage applications from across all four nations of the UK.
Key responsibilities
Share lived experience and insights on behalf of the CF community to inform Registry workstreams and priorities
Confidently articulate views in meetings alongside diverse professionals
Listen to and respectfully consider different perspectives
Collaborate to ensure the voices of people affected by CF are taken into account and shape decision-making
Review committee papers and documents outside meetings as required
Optional: Join the Registry Data Review Group. This group meets online every six weeks and members provide Registry data request approval
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 lie unlimited for people living with CF. Add your experience and voice to the RSC and help steer the future of CF care and research.
Your Experience. Your voice. Your Impact.
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 (as a person with CF or a carer/parent)
Why you want to join the RSC and what perspectives you would bring
Submit your application on Hireful, our recruitment system by selecting "Apply now".
Important Dates
• Closing date for applications: 23:59 Sunday 10 May 2026
Shortlisted candidates will be notified directly of the next stage of the process. We will offer as much notice as possible to support availability.
For any queries, please reach out to recruitment@cysticfibrosis.org.uk. We’ll be happy to support you.
The cystic fibrosis community is diverse, encompassing people of all ages and backgrounds. We are committed to ensuring that this diversity is reflected in the RSC. We are especially interested in hearing from those with lived experience of CF, disabled individuals, and candidates from Black, Asian, and minority ethnic communities, as well as LGBTQI individuals.
Cystic Fibrosis Trust is the UK’s leading charity dedicated to uniting for a life unlimited for everyone with CF – one of the most common life-limiting genetic conditions.
The UK Cystic Fibrosis (CF) Registry is a web-based database that collects health and demographic data for people with CF across the UK. The Registry Steering Committee (RSC) is an independent advisory committee reporting to the Trust Board and responsible for recommending the strategic direction of the Registry and includes clinicians, commissioners, statisticians, Trust staff, and people with lived experience.
About the role
We are seeking individuals with lived experience of cystic fibrosis and caregivers who will bring patient-centred insight to the Registry’s development and use as a member of the RSC.
This is a voluntary role (unpaid), but reasonable expenses can be claimed for travel to attend meetings in person if required.
This role is part time and home based. This is a UK based role and candidates need to be based in the UK.
Term and commitment
RSC membership term: three years (minimum one term).
RSC meets quarterly (commitment to attend at least two meetings per year).
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. We also encourage applications from across all four nations of the UK.
Key responsibilities
Share lived experience and insights on behalf of the CF community to inform Registry workstreams and priorities
Confidently articulate views in meetings alongside diverse professionals
Listen to and respectfully consider different perspectives
Collaborate to ensure the voices of people affected by CF are taken into account and shape decision-making
Review committee papers and documents outside meetings as required
Optional: Join the Registry Data Review Group. This group meets online every six weeks and members provide Registry data request approval
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 lie unlimited for people living with CF. Add your experience and voice to the RSC and help steer the future of CF care and research.
Your Experience. Your voice. Your Impact.
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 (as a person with CF or a carer/parent)
Why you want to join the RSC and what perspectives you would bring
Submit your application on Hireful, our recruitment system by selecting "Apply now".
Important Dates
• Closing date for applications: 23:59 Sunday 10 May 2026
Shortlisted candidates will be notified directly of the next stage of the process. We will offer as much notice as possible to support availability.
For any queries, please reach out to recruitment@cysticfibrosis.org.uk. We’ll be happy to support you.
The cystic fibrosis community is diverse, encompassing people of all ages and backgrounds. We are committed to ensuring that this diversity is reflected in the RSC. We are especially interested in hearing from those with lived experience of CF, disabled individuals, and candidates from Black, Asian, and minority ethnic communities, as well as LGBTQI individuals.