The Australian
NPC Disease Foundation

Australian NPC Disease Foundation is a patient advocate organisation dedicated to building hope for those impacted by Niemann-Pick disease type C (NPC).

What would you do if your doctor told you that your 2yo was going to die? In a slow and progressive manner, like dementia, and there is no cure.

An ultra-rare diagnosis is a tremendously confusing time inherent with confusing explanations, skin-deep treatments and a lot of mixed opinions about what the right course of action is. Should you go home and enjoy the time you have left? Or put all your energy into fighting for experimental treatments? No matter the age of your child, as the parent or carer, your feelings of helplessness, fear and isolation can be tremendously overwhelming.

100% powered by volunteers, and founded by a mother of two children diagnosed with NPC, it is an organisation dedicated to its small and sometimes forgotten community. It is a support system, both emotionally and financially to those left in the gap. It is vital part of a global network, advocating for clinical trials in Australia. It is a major contributor to the only research in Australia currently being conducted to slow or halt the progression of this deadly disease.

To find out more Niemann-Pick disease type C in Australia or how you can help, click ‘learn more’ below.

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