AusPIPS and PID

AusPIPS was founded in 2016 for greater and more effective advocacy for people who have PID. This need was identified by a group of people who have PID and parents of children who have and have had PID. The purposes of the association are to provide advocacy and support for people with Primary Immune Deficiencies (PID) and chronic illnesses, secondary to PID, and their Carers, in Australia.

PID is not contracted, and cannot be caught, it is simply a condition which people are born with. PID is a rare disease i.e.1< in 10,000 as defined by the Australian Rare Disease Community. Most people with PID undergo immunoglobulin and antibiotic therapy. Many need to take extra care to avoid getting more infections, which can lead to isolation and most have other chronic secondary diseases.

 

Statistics published by The Immune Deficiency Foundation (IDF) show that diagnosis of PID typically takes twelve years from the patient first exhibiting symptoms. Some, however wait even longer and others succumb to infection, having never been diagnosed. AusPIPS believes there is a need for these people to have access to advocacy to assist in attaining earlier diagnosis through educating the medical profession on PID. Early diagnosis and undertaking immunoglobulin and or antibiotic therapy reduces patient complications, increasing life expectancy further reducing the risk of organ damage and subsequent need for transplant organs.







Mackie suffered from PID and underwent two bone marrow transplants before losing his battle with the disease


We are dedicated to

As an entity AusPIPS is dedicated to improving the lives of those living with primary immune deficiency (PID) and their carers:

  1. We care
  2. We advocate for change
  3. We work with other organisations to create the best outcomes for those with PID

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