Information and Support for People with IPF and their Carers

COVID-19 Information Resources

New Booklet: Living with Pulmonary Fibrosis - How can oxygen therapy help?

Produced in partnership with Lung Foundation Australia. Available now!

COVID-19: Advice for people living with Pulmonary Fibrosis

This fact sheet was developed through collaboration between the CRE-PF TEDS group and Lung Foundation Australia and includes useful information regarding COVID-19 and how it spreads, how you can reduce the risk of infection, maintaining the management of your health as well as providing links to other useful resources.  The fact sheet can be downloaded here.

Resources developed by Lung Foundation Australia

What is Corona virus and COVID-19? A downloadable information resource developed for people living with lung disease by the Lung Foundation Australia is available here.

COVID-19 Door Poster - Developed to identify residents who are living with a lung condition and request that those intending on entering take extra precautions.  This poster can be downloaded here

CRE-PF/Lung Foundation Australia Webinars

An insight into the impact of Idiopathic Pulmonary Fibrosis in Australia

This webinar provides an insight into the impact of Idiopathic Pulmonary Fibrosis (IPF) in Australia. View  Prof. Haydn Walters, Dr Ingrid Cox and Dr Qiang Zheng as they provide an overview of the University of Tasmania’s research into the epidemiology of IPF, including key statistics and the impact of IPF in Australia. Go to Lung Foundation Australia website and click View Now button.

Consumer webinar:  "Understanding pulmonary fibrosis clinical trials"

Presenter: Prof Dan Chambers

This webinar for consumers provides an insight into clinical trials to help gain an understanding of what it means to participate in research and a pulmonary fibrosis clinical trial. Go to Lung Foundation Australia website and click View Now button.

Understanding COVID-19: Staying fit and strong at home during the pandemic

Maintaining physical health and fitness during isolation may be challenging, especially for those living with lung disease. Senior Respiratory Physiotherapist, Janet Bondarenko provides practical advice for maintaining movement at home. Access to the outside world may be restricted, but the possibilities for home fitness are endless.   

To view this webinar, please go to the Lung Foundation Australia website

Understanding COVID-19: Support for the Carer

Clinical psychologist Debra Sandford discusses the impact of COVID-19 on patients and carers and offers tips & advice on managing emotional wellbeing and mental challenges during this time.

To view this webinar, please go to the Lung Foundation Australia website

Staying safe during the pandemic: COVID-19 information for ILD patients.

This webinar features Professor Dan Chambers MBBS MRCP FRACP MD and highlights the way COVID-19 may affect those with an existing lung disease. This session myth busts the misinformation, offers practical advice for keeping yourself and others safe, and answers your FAQs.

To view this webinar, please go to the Lung Foundation Australia website

Understanding COVID-19: Looking after your mental health during the Coronavirus

This webinar features Clinical Psychologist Debra Sandford, who discusses the importance of emotional well-being during COVID-19.  Hear practical ideas for looking after your mental health and managing challenges whilst navigating through this time of change and physical distance.

To view this webinar, please go to the Lung Foundation Australia website

Managing cough and breathlessness in PF

In this comprehensive session from the recent Lung Foundation Australia Live Well, Breathe Better Pulmonary Fibrosis (PF) Webinar Series , Amanda McAnulty, Senior Physiotherapist in pulmonary, cardiac and chronic disease rehabilitation, shared tips and advice for managing cough and breathlessness in PF.

Click here to view the recording.

Information Sheets

• Life with Pulmonary Fibrosis

This booklet contains information for people who have been diagnosed with Pulmonary Fibrosis and their Carers.

The information booklet can be downloaded here Life with Pulmonary Fibrosis.

• Other Health Conditions and IPF Fact Sheet

This fact sheet provides information on common comorbidities that people with IPF may experience.

The fact sheet can be downloaded here Other Health Conditions Fact Sheet.

• Managing Progression in IPF Fact Sheet

This fact sheet provides information on the progression of IPF and how to identify and manage common symptoms.

The fact sheet can be downloaded here Managing Progression in IPF Fact Sheet.

• Clinical Trials in Lung Diseases Fact Sheet

This fact sheet informs patients of the benefits of participating in a clinical trial and helps provide an understanding of the processes involved. 

The fact sheet can be downloaded here Clinical Trials Fact Sheet.

• Antifibrotic treatments for IPF Fact Sheet

This fact sheet outlines the role of anti-fibrotic medication in IPF treatment and provides information on the use of these medications along with the common side affects that may be experienced. 

The fact sheet can be downloaded here Antifibrotic treatments for IPF Fact Sheet.

• Idiopathic Pulmonary Fibrosis Fact Sheet

This fact Sheet is designed for newly diagnosed IPF patients.

The fact sheet can be downloaded here Idiopathic Pulmonary Fibrosis Fact Sheet.

Support Services

• Pulmonary Fibrosis Peer Connect Service

The PF Peer Connect service, which is run by Lung Foundation Australia, matches people living with Pulmonary Fibrosis and their carers with someone going through a similar experience.

For more information, please download the Peer Connect Flyer here Pulmonary Fibrosis Peer Connect.

Pulmonary Fibrosis Webinars

• Topic: The emotional Impact of IPF

Presenter: Debra Sandford Clinical Psychologist from the University of Adelaide and Royal Adelaide Hospital.

Debra shares information regarding the emotional impact of IPF and the importance of taking care of your emotional wellbeing.

Access the recording of this webinar here.

• Topic: Self-management and Pulmonary Fibrosis

Presenter: Dr John Mackintosh Respiratory and Lung Transplant Physician at Prince Charles Hospital.

This webinar features information on self-management, including guidance on lifestyle and symptom management. John, an IPF patient advocate, also shares his experience of managing day-to-day with IPF.

Access the recording of this webinar here.

• Topic: Oxygen Therapy and Pulmonary Fibrosis

Presenter: Susanne Webster Clinical Nurse Consultant, Royal Prince Alfred Hospital.

This webinar features information on oxygen therapy, including starting on oxygen, tips for incorporating oxygen into your life and travelling with oxygen. 

Access the recording of this webinar here.

• Topic: Exercise and Pulmonary Fibrosis

Presenter: James Walsh Clinical Consultant Physiotherapist from the Queensland Lung Transplant Service & Advanced Heart Failure and Cardiac Transplant Unit at the Prince Charles Hospital.

James shared his knowledge to help develop a better understanding of exercising with this condition and the benefits of exercise for people living with Pulmonary Fibrosis.

Access the recording of this webinar here.

• Topic: Life with Current IPF Medications: the Benefits and Side Effects 

Presenters: Dr Gregory Keir and Bill Van Nierop

Access the recording of the webinar here.

More patient and carer resources are currently being developed, however, for further information and support, please refer to the Lung Foundation Australia website.