Find a job 
Featured Companies 
Featured Universities 
For Companies At a Glance
- Tasks: Share your lived experience to shape the future of cystic fibrosis care and research.
- Company: Join the Cystic Fibrosis Trust, the UK's leading charity for CF.
- Benefits: Make a real impact, develop skills, and gain insights into CF developments.
- Why this job: Be a voice for the CF community and influence important decisions.
- Qualifications: Must have lived experience of CF or be a caregiver; strong communication skills required.
- Other info: Part-time, home-based role with quarterly meetings; travel expenses covered.
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.
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, unpaid role, but reasonable expenses can be claimed for travel to attend meetings in person if required. The role is part‑time and home‑based, and candidates must be based in the UK.
Term and commitment
- RSC membership term: three years (minimum one term).
- The RSC meets quarterly; members are expected 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
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 (online every six weeks, providing 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
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, and we are especially interested in hearing from those with lived experience of CF, disabled individuals, candidates from Black, Asian, and minority ethnic communities, and LGBTQI individuals.
UK CF Registry Steering Committee Members - Lay members (Volunteer role, unpaid) employer: Cystic Fibrosis Trust
Contact Detail:
Cystic Fibrosis Trust Recruiting Team
StudySmarter Expert Advice 🤫
We think this is how you could land UK CF Registry Steering Committee Members - Lay members (Volunteer role, unpaid)
✨Tip Number 1
Network like a pro! Reach out to people in the cystic fibrosis community or related fields. Attend events, join online forums, and connect with others who share your passion for making a difference.
✨Tip Number 2
Be prepared to share your story. When you get the chance to chat with the committee, be ready to articulate your lived experience and how it shapes your perspective. Authenticity goes a long way!
✨Tip Number 3
Show your commitment! Make sure to highlight your willingness to attend meetings and engage with the team. Being an active participant is key to making an impact on the Registry's direction.
✨Tip Number 4
Apply through our website! It’s the best way to ensure your application gets noticed. Plus, it shows you’re serious about joining us in this important work for the CF community.
We think you need these skills to ace UK CF Registry Steering Committee Members - Lay members (Volunteer role, unpaid)
Some tips for your application 🫡
Be Authentic: When you're writing your application, let your true self shine through. Share your lived experience with cystic fibrosis or as a caregiver, and don't be afraid to express your passion for making a difference in the CF community.
Tailor Your Application: Make sure to customise your application to highlight how your experiences align with the role. Refer to specific responsibilities mentioned in the job description and explain how you can contribute to the Registry Steering Committee's goals.
Show Your Team Spirit: Since this role involves collaboration, emphasise your ability to work well with others. Share examples of how you've successfully communicated and collaborated in past experiences, especially in multi-disciplinary settings.
Keep It Clear and Concise: While it's important to share your story, make sure your application is easy to read. Use clear language and structure your thoughts logically. Remember, we want to understand your insights without getting lost in lengthy paragraphs!
How to prepare for a job interview at Cystic Fibrosis Trust
✨Know Your Story
Make sure you can clearly articulate your lived experience with cystic fibrosis or as a caregiver. This is your chance to share personal insights that can shape the Registry's work, so think about specific examples that highlight your journey and how it relates to the role.
✨Research the Cystic Fibrosis Trust
Familiarise yourself with the Cystic Fibrosis Trust’s mission and recent initiatives. Understanding their strategic direction will help you align your answers with their goals and demonstrate your commitment to making a meaningful impact in the CF community.
✨Practice Active Listening
During the interview, show that you can listen and consider different perspectives. This role requires collaboration with diverse professionals, so practice summarising what others say and responding thoughtfully to demonstrate your respect for their views.
✨Prepare Questions
Think of insightful questions to ask at the end of your interview. This shows your genuine interest in the role and the organisation. You might want to ask about the current challenges the RSC faces or how they envision the future of the CF Registry.