Life between breaths: quality of life in children's interstitial and diffuse lung disease

<title>Extract</title> As paediatric pulmonologists and paediatricians, a primary goal is to help children to thrive by easing their discomfort from lung disease. Once in a while, we will identify that one child who is different from the others: the adventitial sounds are atypical, the desaturations exaggerated, the occurrence of respiratory illnesses too frequent or severe, or the growth curve lagging well behind others. We consult colleagues and run a multitude of tests to identify the zebra. Fortunately, large national and international collaboratives have formed, including the Childhood Interstitial Lung Disease (ChILD) Research Network in the USA, the RespiRare cohort in France, and the ChILD European Union Registry, allowing physicians and patients to come together to collectively advance research of these orphan diseases and to improve care [1].