Table 2

 Web links specifically for rare lung diseases

Congenital Central Hypoventilation SyndromeEuropean (in development)
Congenital Central Hypoventilation Syndrome Family NetworkUS network aimed at supporting families, promoting education and research
British Paediatric Orphan Lung Disease RegistryRegistry aimed at gathering cases of rare childhood lung diseases. Contains links to patient/family discussion forum
British Orphan Lung Disease RegistryAdult registry for rare lung diseases
Children’s Interstitial Lung Disease FoundationCharity supporting families with interstitial lung disease. Contains a patient/family discussion forum
Lymphangioleiomyomatosis ActionContains information for patients and doctors caring for patients with LAM
Groupe d’etudes et de recherché sur les maladies ‘orphelines’ pulmonaireFrench site dedicated to research into orphan lung diseases
British Lung FoundationInformation on a range of rare lung disorders