British Paediatric Orphan Lung Diseases (BPOLD) |
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News
2009BPOLD is now funded by the Edinburgh University Research and Development Fund 2008October Thanks to Lynne Thompson, from Breathtakers (plus others) for helping the Patient/Parent forum to take off! However, some have been finding the registration process difficult. See if this GUIDE to registration makes things easier. July New BreatheOn link added to 'Links'. May New Primary Ciliary Dyskinesia Family Support Group link added to 'Links'. Try the new revised patient/parent forum. April BPOLD paper published in Pediatric Pulmonology. 'Establishment of a Web-based Registry for Rare (Orphan) Pediatric Lung Diseases in the United Kingdom'. Pediatr Pulmonol 2008; 43:451-456 and online at www.wiley.com (access rights may be required). 12th February Breathe On UK supports the families of children on long term ventilation and aims to give them all a better quality of life. Breathe on UK is urgently looking for families of Long Term Ventilated children and also oxygen-dependent children from the ages of 0-18 years in order to fulfil the funding criteria. We can fund urgent respite breaks and family holidays. If you or anyone you know has such a child please contact us by registering online at the following website. www.breatheon.org.uk or contact us via email at or telephone 01258820274. 200712th December Added new site to 'Links' - www.Breathtakers.co.uk for sufferers of Obliterative Bronchiolitis. 4th June Problems with sending email following server company new installation of PHP affected MAIL function. Hopefully rectified but being monitored. Please let BPOLD know using the REGISTER page if you did not receive the June emailshot. 200615th OctoberThe 'Monthly Returns' page has been updated with example images of the emails and web pages you will meet as you use the new system - see HERE 1st JulyBPOLD is changing! The BPOLD monthly returns process is to change on 1st June 2006. Instead of requiring user name and password access, registered BPOLD users will receive a monthly email prompt with links to record their returns data. Nothing to report is recorded by a single-click while cases to report can be entered quickly with fuller details added when you have the time. See the 'Monthly Returns' link above for more details. You can also contact Dr. Oliver Zanetti News archive
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BPOLD is funded by the Edinburgh University Research and Development Fund
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