A Journey to Transform Care for Children with Rare Lung Disease

Opportunities exist today to create new strategies to transform care and find cures. As a pediatric pulmonary specialist, most of my patients have rare disease. Many patients and their families often struggle to find better understanding, care, and treatments for their children. Through the advocacy of patients, physicians, and scientists a collaborative journey to create a roadmap of hope began for children with interstitial and diffuse lung disease (chILD). Examples will be shared that highlight the use of systems, proteomics, genomics, stem cells, and information technology as tools to address the needs of children with rare lung disease.