Children with rare lung diseases often have inequitable care due to the rarity of their conditions (<1 in 2500 prevalence). This includes difficulty in getting a diagnosis; access to medical expertise, research and treatment as well as getting accurate information on their disease. As National and International experts we work in close collaboration with the respiratory department at Sydney Children’s Hospital in an interdisciplinary environment to ensure that we embed research and education into looking after children to address these inequities. Our work extends into national and international collaborative networks.

Our goals

Our goals are to improve diagnosis, treatment and support for children to improve the health and wellbeing of children living a rare lung disease.

Research strengths

We have expertise caring for children with the following conditions: 

  • Cystic fibrosis {LINK TO MiCF Research Laboratory} 
  • Children with Interstitial Lung Disease 
  • Bronchiectasis 
  • Tracheo-oesophageal fistula 
  • Congenital lung malformations 
  • Primary ciliary dyskinesia 
  • Neuromuscular disorders 
  • Complex airways 
  • Long term ventilation 
  • Bleomycin induced lung disease 

We have expertise in basic discovery science and translate that research into clinical trials in children. Our research strengths include genetics, precision medicine, drug discovery, clinical trials, virtual care, big data, registries and new imaging techniques {link to NSW Research Imaging Facility}

Our results

  • Our genetics approach has increased diagnoses for children with Children with Interstitial Lung Disease 
  • Our drug discovery program has identified potential new therapies for cystic fibrosis