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.

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.

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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.