Living Well With Cystic Fibrosis


The mission of the Living Well with CF (LWWCF) initiative is to support physical, psychological and social health and wellbeing by empowering those living with CF as patients, carers and family, to “live well” on their own terms. We do this by enabling access to up-to-date, quality information, resources and supports and by fostering improved communication, connection, and collaboration across the CF community.

Living with CF impacts children, young people and adults with CF as well as their carers, families, and friends across physical, psychological and social aspects of their lives.

Advances in CF care, including the introduction of CFTR modulator therapy for eligible patients, have extended life expectancy considerably.1-3 While this is good news, it can present an unprecedented challenge for people living with CF as they adjust to “a life unplanned for”. This changing landscape has altered the impacts that CF brings over the course of life. It has also changed the experience of providing CF care for multidisciplinary CF healthcare professionals.

In an endeavour to respond to this need, LWWCF draws on lived experience and multidisciplinary, cross-sector collaboration, to optimise physical, psychological and social health and wellbeing for those living with CF.

We aim to improve access to the excellent information, resources and support that exist for people living with CF, and where needed, augment these to “fill the gaps”. By fostering excellence in CF care, connection, communication and collaboration, we hope to support those living with CF as patients, carers and family, to Live Well.

The LWWCF Journey

The LWWCF Journey began in mid-2022 when the LWWCF Steering Group convened to consider what Living Well with CF means, and what is needed to enable those living with CF to Live Well.

Read more about Our journey and the Steering Group behind LWWCF.

Our Strategic Framework and Direction

The LWWCF Strategic Framework provides an overview of the vision, mission, and critical success factors for LWWCF that are built on the four pillars of Care, Connection, Communication, Collaboration.

Read more about Our strategic direction and priorities for 2023.

Partner With Us

To empower those with CF to Live Well, we need to work together. The strength of the LWWCF initiative lies in collaboration between those living with CF, multidisciplinary healthcare professionals and health and community care organisations.

Read more about our Sponsors and Partners, and opportunities to Partner with us.

References: 1. Smith BA, et al. Pediatr Pulmonol. 2016;51(S44):S71-S78. 2. Havermans T and Staab D. Thorax. 2016;71(1):1-2. 3. Balfour-Lynn IM and King JA. Pediatr Respir Rev. 2022. 2022;42:3-8.