Pulmonary Hypertension Association Australia – PHA Australia

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Pulmonary Hypertension Association Australia Incorporated - PHA Australia (PHAA) is a national, registered, non-profit organisation that provides education, support, and awareness initiatives to PH patients and family members not only in Australia, but throughout the world. Our management committee of 9, all volunteers, is elected every 2 years at an Annual General Meeting. We are an internet based association run by patients and their families for PH patients, family members, friends, carers and anyone touched by pulmonary hypertension. We also have groups on facebook, twitter and have our own You Tube channel. PHAA overrides the barriers of isolation that many Australians have when managing a life threatening rare illness. Our mission is to provide hope, support and education, to promote awareness and to advocate for the pulmonary hypertension community.

Pulmonary Hypertension (PH) is a multi-faceted disease affecting the pulmonary arteries in the lungs, causing difficulty getting oxygen to the heart and throughout the body, and enlarging and debilitating the right side of the heart. Patients with PH often suffer from shortness of breath, fainting spells, and fatigue, and without treatment are given a prognosis of 2.8 years to live. With appropriate treatment, patients can usually live much fuller, longer lives. Unfortunately, however, there is no current cure for the disease, other than the very risky and not universally available double lung and heart transplant. Pulmonary Arterial Hypertension (PAH), a category of PH, is treatable with medication. There are 8 medications currently (2017) available on the PBS in Australia out of the 14 available overseas. The financial strain this rare disease imposes on sufferers impacts every facet of their lives so we try not to add to the burden by charging membership fees, we reply on our members who are often too ill to help, and generous supporters for funding to enable us to maintain our website and help the ever growing number of families. It is estimated (using Heart Foundation figures) that for every patient there are 18 members of their family that are impacted by this disease, we support them too.
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