Contact Us

Phone
Alison Hey-Cunningham +61 2 9515 6651    

Email
alison.hey-cunningham@sydney.edu.au

Address
Centre of Research Excellence in Pulmonary Fibrosis
Respiratory Medicine and Sleep Unit
Level 11, Royal Prince Alfred Hospital
Camperdown NSW 2050

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Education and Patient Support

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. The Lung Foundation Australia is a critical partner for CRE-PF. Its established and highly successful infrastructure has assisted us with the development of resources that promote the important role of the patient in managing pulmonary fibrosis.

Some of the resources that have been developed so far include the following:

Life with Pulmonary Fibrosis Booklet

This booklet, developed in collaboration with Lung Foundation Australia, contains information for people who have been diagnosed with Pulmonary Fibrosis and their Carers.

IPF Fact Sheet

This fact sheet has been developed in collaboration with the Lung Foundation Australia and aims to provide initial information for people who have just been diagnosed with IPF.

Pulmonary Fibrosis Webinars

The Lung Foundation Australia's PF webinar series provides patients, carers and family members as well as interested health professionals with advice and support about living with Pulmonary Fibrosis.

These education and support resources are available by clicking the links in their headings above or via our Tools and Resources webpage which contains links to these and additional resources. Further resources are also available on the Lung Foundation Australia website.

There will be more resources to follow, but in the meantime please refer to the Lung Foundation Australia website for further information and support options.

Evaluation of Lung Foundation Australia's Peer Connect Service

To meet the expressed support needs of people with PF and to overcome these challenges, Lung Foundation Australia has developed the PF Peer Connect service. This service, unique in the world, aims to facilitate peer support for people with PF wherever they are located in Australia.

This evaluation aimed to:

  1. Document the experience of people with PF who are participating in the Peer Connect service.
  2. Document the resources required to support the PF Peer Support service.

This evaluation has been completed and the results are available on our Tools and Resources page.