Find a job 
Featured Companies 
Featured Universities 
For Companies At a Glance
- Tasks: Shape the future of cystic fibrosis care and research through strategic discussions.
- Company: Join the Cystic Fibrosis Trust, the UK's leading charity for CF.
- Benefits: Make a meaningful impact, develop skills, and engage with purpose-driven peers.
- Why this job: Your voice can steer the future of CF care and research.
- Qualifications: Knowledge of cystic fibrosis and ability to contribute to committee discussions.
- Other info: Voluntary role with flexible home-based commitment and reasonable travel expenses covered.
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 new Professional members of the RSC to help shape the future of the Registry and ensure it meets the needs of people with CF, clinical teams, researchers and other stakeholders. 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 UK based.
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
- Adult and paediatric clinicians
- Early career professionals
- Pharmacists
- Allied health professionals
- Psychosocial workers
Applicants from across all four nations of the UK and from both adult and paediatric services are encouraged to apply.
Key responsibilities
- Contribute to strategic discussions and decision-making about the Registry’s direction.
- Review RSC papers and related documents outside scheduled meetings.
- Act as an advocate for the UK CF Registry.
- Optional: Join the Registry Data Review Group. This group meets online every six weeks and members provide Registry data request approval.
Essential experience and attributes
- Knowledge of cystic fibrosis and its key challenges.
- Ability to actively contribute to committee discussions and support informed decision-making.
- Ideally some experience working with the UK CF Registry or using its data outputs.
- CF clinicians and AHPs should be members of relevant professional bodies (e.g., BTS/BPRS, RCP/RCN, Cystic Fibrosis Specialist Group, CFMA).
Why join us?
- Make a meaningful impact on the lives of people affected by CF.
- Shape future Registry development and research.
- Engage with purpose‑led peers and develop transferable skills (e.g., application reviewing, public speaking).
- Demonstrate continuing professional development through voluntary service.
Together we’re uniting for a life 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 detailing why you want to join the RSC and what you would bring to the RSC (a max of 2 A4 pages). Submit your application on Hireful, our recruitment system by selecting "Apply now".
Important Dates
Closing date for applications: 23:59 Sunday 10 May 2026.
Volunteer: UK CF Registry Steering Committee Members - Professionals employer: Cystic Fibrosis Trust
Contact Detail:
Cystic Fibrosis Trust Recruiting Team
StudySmarter Expert Advice 🤫
We think this is how you could land Volunteer: UK CF Registry Steering Committee Members - Professionals
✨Tip Number 1
Network like a pro! Reach out to professionals in the cystic fibrosis community, attend relevant events, and engage on social media. Building connections can open doors and give you insights into the role.
✨Tip Number 2
Prepare for those interviews! Research the Cystic Fibrosis Trust and the UK CF Registry thoroughly. Understand their mission and how your skills align with their goals. This will help you stand out as a passionate candidate.
✨Tip Number 3
Show your commitment! Highlight any previous volunteer work or relevant experience in your discussions. Demonstrating your dedication to making a difference in the CF community can really impress the committee.
✨Tip Number 4
Don’t forget to apply through our website! It’s the best way to ensure your application gets seen. Plus, it shows you’re serious about joining the team and contributing to the future of CF care.
We think you need these skills to ace Volunteer: UK CF Registry Steering Committee Members - Professionals
Some tips for your application 🫡
Know Your Stuff: Before you start writing, make sure you understand cystic fibrosis and the role of the UK CF Registry. This will help you tailor your CV and cover letter to show how your experience aligns with what we’re looking for.
Be Personal and Passionate: In your cover letter, let us know why you want to join the RSC. Share your personal connection to CF or your passion for making a difference in this field. We love to see genuine enthusiasm!
Keep It Concise: Remember, you’ve got a max of 2 A4 pages for your application. Be clear and to the point. Highlight your key experiences and skills that relate directly to the role without waffling on.
Submit Through Our Website: Make sure to submit your application via our recruitment system, Hireful. It’s super easy! Just hit 'Apply now' and follow the prompts. We can’t wait to see what you bring to the table!
How to prepare for a job interview at Cystic Fibrosis Trust
✨Know Your CF Stuff
Make sure you brush up on your knowledge of cystic fibrosis and its challenges. Familiarise yourself with the UK CF Registry and its significance. This will help you engage in meaningful discussions during the interview.
✨Show Your Passion
Express why you want to be part of the Registry Steering Committee. Share personal experiences or motivations that drive your interest in improving the lives of those affected by CF. Authenticity goes a long way!
✨Prepare for Committee Dynamics
Understand the role of the RSC and how it interacts with various stakeholders. Be ready to discuss how you can contribute to strategic decision-making and advocate for the Registry effectively.
✨Practice Your Communication Skills
Since this role involves collaboration and advocacy, practice articulating your thoughts clearly. Consider mock interviews or discussions with peers to refine your public speaking and committee contribution skills.