Turning the Spotlight on the Rare Lung Disease

In Australia, people diagnosed with a rare lung condition are left feeling isolated, helpless and riddled with uncertainty and despair for the future due to the lack of information, support, treatment and research available.

In a bid to Turn the Spotlight on Rare Lung Disease, Lung Foundation Australia held a Parliamentary Friends for Lung Health event at Parliament House in Canberra on Wednesday 14 June 2017. Over 45 guests attended including Members of Parliament, clinicians, support group representatives, patients and carers. A big thank you to John Alexander OAM MP and Steve Georganas MP for hosting the event and to Tegan and Liz who shared their stories of how rare lung disease has impacted their lives.

Read and share their stories now to help us raise awareness of rare lung disease #Share4RareLung.

Charli’s story

3 year old Charli is constantly hooked to an oxygen tank, making normal everyday activities like going to the park a challenge. At just 12 months old, Charli was diagnosed with a rare lung disease. The doctors have not been able to provide her parents with a clear treatment plan or prognosis, so it is unclear what Charli’s long term prospects are.

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Tegan’s story

At the age of 5, my mum was told I had 5 years to live. I have Pulmonary Arterial Hypertension (PAH), which is a progressive and life limiting disease. Access to a trial medication is what has kept me alive and allowed me to live a somewhat normal life. Unfortunately my story is the exception rather than the rule.

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