Advancing NP-C Care in Australia: Our New Guidelines Page
- ANPDF
- 5 days ago
- 2 min read
At the Australian NPC Disease Foundation (ANPDF), we know that access to accurate, up-to-date medical guidance can make all the difference for individuals living with Niemann-Pick type C (NP-C) and their families. That’s why we’re excited to introduce a dedicated webpage for our National Care and Guidelines for NP-C—a groundbreaking project that establishes Australia’s first standard of care for this rare and complex disease.
Why These Guidelines Matter
NP-C is the fifth most common lysosomal disorder in Australia and a known cause of childhood dementia. Despite this, awareness of NP-C remains low, and many families struggle to find clinicians who understand the condition.
To change this, ANPDF worked with 40 clinicians, allied health professionals, and community members to develop a comprehensive, Australia-specific standard of care. This process built upon international guidelines while ensuring that recommendations were adapted to our local healthcare system and the real-world experiences of Australian families.
What You’ll Find on the New Webpage
Our new landing page provides an overview of the guidelines project, highlighting key outcomes such as:
✅ 23 expert-backed consensus statements defining best-practice care
✅ A diagnostic algorithm to support earlier identification of NP-C
✅ A multidisciplinary team framework to improve coordination of care
This page will also serve as the gateway to more detailed resources, including the published clinical summary for healthcare professionals and an easy-to-navigate breakdown of the full guidelines (coming soon!).
A Major Step Forward for the NP-C Community
For the first time, Australia has a nationally recognised, evidence-based guide to help clinicians, families, and allied health professionals work together in managing NP-C.
"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 increasing awareness, improving diagnosis, and standardising care, these guidelines will help families receive the support they deserve—from day one.
We invite you to visit the new webpage and explore this important step forward for the Australian NP-C community. Stay tuned as we continue to expand our resources!