AusPIPS Inc.AusPIPS Inc. is a fully tax endorsed health promotion charity, which is registered with the Australian Charity and Not for Profit Commission (ACNC).
AusPIPS Inc.’s purpose is to Advocate and Support People with Primary Immune Deficiency and associated chronic illnesses, in Australia.”
AusPIPS Inc. is a collective of people who have had a Primary Immune Deficiency (PID) diagnosis along with parents and grandparents of children who have had the same.
AusPIPS Inc. formed to meet a very clear need in Australia, for a patient organisation to be able to provide Advocacy, Support and Education for people who have a PID diagnosis and secondary chronic medical conditions, along with their carers.
PID illnesses are rare diseases, i.e.1< in 10,000 as defined by the Rare Disease Community. Most people with PID are treated with immunoglobulin and antibiotic therapy. Many of them are not able to function in the community and are not well enough to work, others require isolation. Some are transplant patients. A large majority of PID patients also have numerous secondary health conditions.
AusPIPS Inc. works with people who have PID and their Carers, government, hospitals and medical professionals to help enhance the health care system that helps to keep people who have had a diagnosis of PID, alive and as well as possible.
AusPIPS Inc. also works with people who have been diagnosed with PID, along with their carers to encourage them to take care of themselves as best they can, so they can stay out of hospital as much as possible and overall have a better quality of life.
What People Say
| || |
As a parent of a child living with a rare disease it is challenging to find help and support. It also took a long time to get a formal diagnosis and a treatment regime which worked for PID. Organisations like AusPIPS can help to make a difference in pointing people in the right direction and working to advocate for change. Without support from charities and other patients that had been down the road before us I would have been lost.
Anon - NSW
There have been a number of occasions since I was diagnosed with CVID, that I've felt very vulnerable and disempowered, mainly when in hospital, especially when things have gone wrong. Previously I have tried to follow up through available formal complaint processes but without any success and somewhat to my detriment. Finally having an organisation such as AusPIPS, that can advocate and speak up on my behalf, gives me much excitement and less fear for the future.
Anon - VIC