National Care and Guidelines for Niemann-Pick disease type C
This nationwide collaborative project aims to improve the standard of care for children and families impacted by Niemann-Pick disease type C (NP-C). Our project will create resources to equip clinicians and the community to better identify, diagnose and effectively manage this severe, life-limiting disease. Through the adaptation of 2018 international guidelines with Niemann-Pick specialists and the community, we will create knowledge-building resources that make a positive impact on the lives of people living with NP-C.
Key Deliverables
Australian Niemann-Pick Type-C Disease Guideline: published in an academic journal
Australian Niemann-Pick Type-C Disease Guideline - Clinician Summary: published in an academic journal
NPC Care and Guidelines: a community co-created summary published on the ANPDF website
Benefit To You
Addresses community and health professional need for more disease-specific information
Equips community to advocate for effective disease treatment and management
Builds the capacity of healthcare workers and clinicians to better treat and support people impacted by NPC
Support this project by donating today at www.npcd.org.au/donate
Project Details
In-House Project
12 months
Deadline
Mon Jun 30 2025 02:00:00 GMT+0000 (Coordinated Universal Time)
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