Australasian Registry Network for Orphan Lung Disease

NEWS

2012

APRIL

Breathtakers OB Trust have launched their route map for Obliterative Bronchiolitis. The map is a one stop shop for the journey of OB to be used by medical professionals and families you can view at : www.routemap.breathtakers.org.uk or access from the web at: www.breathtakers.org.uk

MARCH

The UK OB Trust has launched the US support page on their website to help raise awareness in the USA for people suffering from  obliterative bronchiolitis.

Visit the rare diseases workshop in Sydney. See flyer and program

Rare Lung Diseases has a dedicated symposium at the Thoracic Society of Australia and New Zealand, Canberra 31st March 2012

FEBRUARY

Come participate on Rare Disease Day, Australia February 29th 2012

READ/WATCH

Please download and read the report 'Awakening Australia to Rare Diseases: Global perspectives on establishing a coordinated approach to a national plan'

Patricia Heaton speaks about chILD - watch her interview on the Ellen DeGeneres show here

WEBSITE UPDATES

New Orphanet newsletter link added to Links

We are having trouble with spam posting on the forum - removing on a daily basis until a solution is found.

OTHER NEWS

An Australian Idiopathic Pulmonary Fibrosis Registry is currently under development and It is anticipated that the registry will start recruiting in early 2012

 

2009 news here