Web links specifically for rare lung diseases
| Website | Description | Address |
|---|---|---|
| Congenital Central Hypoventilation Syndrome | European registry | www.cchsregistry.org (in development) |
| Congenital Central Hypoventilation Syndrome Family Network | US network aimed at supporting families, promoting education and research | www.cchsnetwork.org |
| British Paediatric Orphan Lung Disease Registry | Registry aimed at gathering cases of rare childhood lung diseases. Contains links to patient/family discussion forum | www.bpold.co.uk |
| British Orphan Lung Disease Registry | Adult registry for rare lung diseases | www.brit-thoracic.org.uk/introduction_to_bold.html |
| Children’s Interstitial Lung Disease Foundation | Charity supporting families with interstitial lung disease. Contains a patient/family discussion forum | www.childfoundation.info |
| Lymphangioleiomyomatosis Action | Contains information for patients and doctors caring for patients with LAM | www.lamaction.org |
| Groupe d’etudes et de recherché sur les maladies ‘orphelines’ pulmonaire | French site dedicated to research into orphan lung diseases | http://germop.univ-lyon1.fr |
| British Lung Foundation | Information on a range of rare lung disorders | www.lunguk.org |