Cystic Fibrosis Trust Company Profile

About us

Cystic Fibrosis Trust is the UK's leading charity supporting people with cystic fibrosis (CF).

CF is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives. We fund vital research, improve care, campaign hard to drive change and race towards effective treatments for all, and directly support people with CF and their families.

We won’t stop until everyone can live a life unlimited by CF, meaning:

- People with CF are able to live their lives without the physical and health challenges of CF.

- People with CF are able to manage the emotional and psychological pressures of living with a long-term, life-limiting condition like CF.

- People with CF are able to live the life they want to lead, as part of a connected community.

All of our work is built around our core values:

Together

- We work together to represent the diverse experiences of everyone affected by CF.

- We are committed to making the Trust a truly inclusive workplace, where everyone feels they belong.

- We build collaborative and supportive relationships with colleagues, stakeholders and people affected by CF, but we also challenge where needed. We proactively work with people who have a diverse range of expertise and experience.

Trusted

- Our work can be trusted by everyone affected by CF, our supporters and CF professionals. We are informed by evidence, accelerating progress in CF.

- We are professional, transparent and understand the impact of our actions, words and campaigns. Our beliefs and actions are rooted in being trustworthy, compassionate and caring.

Unstoppable

- We thrive on innovation and will take brave but considered risks to overcome challenges. We champion the CF cause, pushing for changes that will improve the lives of people living with CF.

- We are ambitious, determined and courageous. We are committed to delivering impact for people living with CF while also maintaining a healthy work/life balance.

Some of our key areas of work include:

- Innovative and impactful research programmes that accelerate breakthrough science and therapeutics.

- A ground-breaking Clinical Trials Accelerator Platform to inform the CF community about how to take part in the clinical trials needed to ensure new drugs reach the shelves, and to support CF centres in recruiting suitable participants for these trials

- Support to CF clinical teams in the NHS and improvements in the way care is delivered, as well as continuing support to attract new talent into the field of CF care

- High quality information, support and advice that enables even more people with CF to make the right choices for them at all stages of their lives.

- High-impact campaigns for change, particularly on fair access to new medicines that have the potential to transform the lives of people affected by cystic fibrosis.

For more information on our work – including the many areas not covered above, please see our website.

Our Company's Commitment and Culture

Cystic fibrosis is recognised as a disability and affects over 11,000 people in the UK who all experience it differently.

As well as the daily struggles of their condition, people with CF can also face other barriers like financial worries, poor housing conditions or differences in experience because of where they live in the UK.

We know that people from an ethnic minority are more likely to have a rare form of CF and our latest registry report shows that only 67.5% of people from an ethnic minority are able to benefit from the new modulator drugs.

We’re strengthening our focus on equity, diversity, and inclusion to address the inequalities that exist for people with cystic fibrosis and their families. We want to truly represent everyone with cystic fibrosis, but our ambition won’t be achieved unless equity, diversity and inclusion (EDI) is at the heart of everything we do, and everyone affected by cystic fibrosis is able to live a life unlimited.

Our Equity, Diversity and Inclusion Policy outlines how we will achieve this, by setting out our commitments toward achieving health equity, recognising, engaging with and reflecting the full diversity of the CF community, and making sure the Trust is and feels like an inclusive place to work.

We consider our commitment to EDI to not just cover our role as an employer – but across all of our work across our community.

In the area of the Trust as an employer, we aim to attract and retain the best people to work for us through having inclusive and fair policies and make the following commitments:

- We will recruit and promote on the basis of merit (apart from eligible exemptions under equalities legislation).

- Wherever possible, make reasonable adjustments to support anyone working for us.

- We will have mechanisms in place to collect and report data to better understand our staff and their experiences of working at the Trust.

- We will ensure we review our people processes (and their outcomes) regularly to identify and eliminate barriers at work.

Accessibility provisions in the workplace

In our efforts to realise the commitments we have made above, we have undertaken a range of actions. Some of the specific steps and adjustments we have made as an employer include:

- The option across almost all roles to be office, home or hybrid-based. For people with cystic fibrosis, ‘cross-infection’ (i.e. the risk of passing bugs to each other when meeting face-to-face) can be very harmful and poses a particular threat. As such, all Trust roles, activities and processes are designed as hybrid and with remote participation in mind.

- Offering adjustments during recruitment processes, aimed at supporting disabled and neurodivergent candidates, including sharing questions in advance.

- Time off to attend clinical appointments, with various specific adjustments in particular for people affected by cystic fibrosis (as well as other conditions).

- Offering various reasonable adjustments upon request, such as varying working hours and practices, providing DSE assessments and other equipment to ensure staff are able to work safely and comfortably.

- Introducing Trust-wide EDI Strategy and Policies, including both internal elements (us as an employer) and external (how we carry out our mission and ensure we address health inequality across our community and reach & represent everyone affected by cystic fibrosis.

Alongside many other possible adjustments.

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