ARNOLD - Australasian Registry Network for Orphan Lung Disease

Australasian Registry Network for Orphan Lung Disease

Links

Site
Description
   
Australian Lung Foundation
 
   
Australian Thoracic Society of Australia and New Zealand
 
   
Adult Interstitial Lung Disease Information
 
   
Infant Interstitial Lung Disease Information
 
   
BreatheOn
Uk National charity supporting all young people up to the age of 21 years who are either ventilated or technology dependent for over three months.
   
British Thoracic Society
 
   
Orphanet
 
   
Breathtakers
a support group for sufferers of Obliterative Bronchiolitis
   
The National electronic Library for Health - Respiratory
 
   
Primary Ciliary Dyskinesia Family Support Group
 
   
European Organisation for Rare Diseases
 
   
British Paediatric Respiratory Society
 
   
Contact a Family
For families with disabled children
   
British Paediatric Surveillance Unit
(RCPCH)
   
National Organisation for Rare Disorders
 
   
chILD Foundation
Parental support group in USA for Interstitial Lung Disease
   
Children Interstitial Lung Disease Yahoo Group
Chat room for parents with Interstitial Lung Disease
   
Little Leakers
USA site for children with Lymphangiectasia
   
www.phnsw.org.au NEW
Pulmonary Hypertension
   
www.phaaustralia.com.au NEW
     
http://www.phaassociation.org/ NEW
     
www.phassociation.uk.com/ NEW
     

Orphan lung diseases

Congenital malformations
Grown up (>16 years) chronic neonatal lung disease
Lymphangioleiomyomatosis
Alveolar haemorrhage syndrome
Langerhans cell histiocytosis
Pulmonary vasculitides
  • Wegeners granulomatosis
  • Churg-Strauss vasculitis
  • Other vasculitides incl. microscopic polyangiitis