Alison Hey-Cunningham +61 2 9515 6651
Centre of Research Excellence in Pulmonary Fibrosis
Respiratory Medicine and Sleep Unit
Level 11, Royal Prince Alfred Hospital
Camperdown NSW 2050
The greatest need expressed by patients that we have identified, is for honest, understandable and disease-specific information about what the future might hold.
Therefore, one of the main aims of the CRE-PF is to develop and maintain educational and support resources for patients and community partners. We have achieved this in partnership with Lung Foundation Australia, working together to promote the important role of the patient in managing pulmonary fibrosis.
Some of the types of resources that have been developed include booklets, fact sheets and webinars. These education and support resources are available or via our Tools and Resources webpage. Further resources and information are also available on the Lung Foundation Australia website.
We also partner with Lung Foundation Australia on further information and support options, including peer to peer connections through the PF Peer Connect service and support groups.
The PF Peer Connect service has been evaluated by the TEDS team and results shared in an academic publication. The PF Peer Connect service was developed to meet the expressed support needs of people with PF. This service, unique in the world, facilitates peer support for people with PF wherever they are located in Australia and has been so successful that the model is now used for support programs in other lung conditions.
More patient and carer resources are currently being developed and will be available soon on our Tools and Resources webpage and the Lung Foundation Australia website.