The Australian Care and Guidelines for NP-C is Coming

SOON

Establishing a Better Standard of Care for Niemann-Pick Type C in Australia

Niemann-Pick type C (NP-C) is the fifth most common lysosomal disorder in Australia and a known cause of childhood dementia. Despite this, many individuals face delayed diagnoses and inconsistent care due to a lack of clinical awareness and understanding.

In response, the Australian NPC Disease Foundation (ANPDF) has led the development of Australia’s first national care and guidelines for NP-C. This project brings together the expertise of 40 clinicians, allied health professionals, and community members to create a practical, evidence-based framework for the recognition, diagnosis, and management of NP-C.

How the Guidelines Were Developed

Using the 2018 international guidelines as a foundation, the advisory groups conducted a detailed review, ensuring that each recommendation aligns with Australia’s healthcare system and the lived experiences of those affected.

This process resulted in:

23 consensus statements defining best-practice care
A diagnostic algorithm to improve early detection
A multidisciplinary team framework for coordinated support

For the first time, Australia has a nationally recognised approach to NP-C care—one that empowers clinicians, allied health professionals, families, and caregivers with the tools they need to navigate this complex disease.

What’s Next?

This dedicated webpage will soon be updated, providing easy access to different sections of the guidelines, along with a downloadble clinical summary designed for healthcare professionals.

What This Means for Families

"I think it’s great that the foundation is doing something so important like this. It’s progress. Every bit counts! This is an important piece and will help our families."
— Community Advisory Board Member

By ensuring consistent, informed care, these guidelines mark a major step forward in improving health outcomes and quality of life for those living with NP-C in Australia.

Stay tuned for more updates as we launch this vital resource!

Get on the List

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