Cystic fibrosis (CF) is a complex genetic disorder that primarily affects the lungs, but it also manifests in various extrapulmonary conditions, including renal and metabolic disorders. As individuals with CF are living longer thanks to advancements in medical treatments, there is a growing concern over the development of age-related health issues such as diabetes, which can increase the risk of chronic kidney disease (CKD) in this population.
Kidney stones are also a common issue among people with CF, further highlighting the need for better understanding, treatment, and prevention of renal and metabolic complications in these individuals. While significant progress has been made in managing CF lung disease with highly effective modulator therapies (HEMT), there is still much to learn about how these treatments impact extrapulmonary conditions. To address these challenges, the "Cystic Fibrosis & Extrapulmonary Manifestations of Disease" initiative has been established to bring together researchers dedicated to studying renal, metabolic, and urologic disorders in individuals with CF. By fostering a collaborative environment, this group aims to expand our knowledge of these conditions and develop effective strategies for managing them. The ultimate goal of this project is to translate research findings into improved clinical practices, ultimately enhancing the quality of life for people with CF who may be at risk for renal and metabolic complications. By creating a platform for information sharing and discussion, the initiative seeks to empower patients, healthcare professionals, and scientists to work together towards better outcomes for those living with CF. In conclusion, by focusing on extrapulmonary manifestations of CF, particularly renal and metabolic disorders, we can advance our understanding of these conditions and work towards improving the overall health and well-being of individuals with cystic fibrosis.
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