The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.
British Paediatric Orphan Lung Disease
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.
The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and that credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions are strictly prohibited.
NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.