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Diagnostic delay is common, impacted by disease heterogeneity, limited awareness within clinical gateway services and exclusion from state\u2010based newborn screening programmes. A formal diagnosis, once established, places a substantial burden on the whole family, the negative impact of which is far\u2010reaching. A clear understanding of diagnostic pathways and management objectives in NP\u2010C is critical for optimal care.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aims<\/jats:title>\n                    <jats:p>To develop an Australian standard of care for individuals diagnosed with NP\u2010C and their families, reflecting international best practice and tailored to the Australian healthcare system.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>The Australian NPC Disease Foundation Inc. convened a national, multidisciplinary collaboration including NP\u2010C treating clinicians, allied health professionals and a community advisory group. Using an iterative consensus approach, published international guidance statements were reviewed, ratified, excluded or modified to align with the Australian context.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Consensus outputs included a diagnostic algorithm, a multidisciplinary care framework and management\u2010centred management statements. The collaborative process resulted in a unified Australian standard of care for NP\u2010C. This framework incorporates the carer perspective, emphasises shared decision\u2010making and situates NP\u2010C within the broader context of \u2018childhood dementias.\u2019 Consensus statements provide practical, evidence\u2010aligned guidance on early recognition, diagnostic referral pathways and multidisciplinary management throughout disease progression.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>This initiative represents the first Australia\u2010specific standard of care for NP\u2010C. It is hoped that adoption of the framework will lead to improved experiences for Australians living with NP\u2010C and their carers as they navigate the healthcare setting.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/imj.70370","type":"journal-article","created":{"date-parts":[[2026,3,13]],"date-time":"2026-03-13T16:25:36Z","timestamp":1773419136000},"page":"832-848","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["An Australian standard of care for Niemann\u2013Pick disease type C"],"prefix":"10.1111","volume":"56","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9700-7898","authenticated-orcid":false,"given":"Michel","family":"Tchan","sequence":"first","affiliation":[{"name":"Genetic Medicine Westmead Hospital  Sydney New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicholas","family":"Smith","sequence":"additional","affiliation":[{"name":"Discipline of Paediatrics University of Adelaide, Women's and Children's Hospital  Adelaide South Australia Australia"},{"name":"Department of Neurology and Clinical Neurophysiology Women's and Children's Health Network  Adelaide South Australia Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7189-5874","authenticated-orcid":false,"given":"Heidi","family":"Peters","sequence":"additional","affiliation":[{"name":"Metabolic Medicine The Royal Children's Hospital  Melbourne Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0000-2121-5922","authenticated-orcid":false,"given":"Ellie","family":"Van Velsen","sequence":"additional","affiliation":[{"name":"Australian NPC Disease Foundation Inc.  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