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British Paediatric Orphan Lung Disease
a/k/a: BPOLD
Address
Email Address
admin@bpold.co.uk
Website
The British Paediatric Orphan Lung Disease (BPOLD) is a non-profit organization whose aim is to establish a registry of rare lung diseases in children in the UK. The registry will provide epidemiological data on the prevalence and incidence of individual rare lung diseases and inform research projects which will increase understanding of these diseases and ultimately improve treatment strategies for these children. BPOLD provides a monthly email page, which allows registered BPRS clinicians to submit monthly details of their pediatric patients with orphan lung disease. BPOLD also offers an information resource for clinicians, patients and their families/caregivers, with the latest knowledge provided on each disease and a support forum, aimed at establishing self-help groups for patients and their families. The diseases that BPOLD currently provides information on include: congenital cystic lung lesions, congenital central hypoventilation syndrome, interstitial lung disease, obliterative bronchiolitis, pulmonary alveolar proteinosis, pulmonary papillomatosis, bronchiectasis of unknown cause, pleural and pulmonary lymphangiectasia, idiopathic pulmonary haemosiderosis.
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