International Niemann–Pick Disease Alliance

Think Again. Think NP-C: Improving Diagnosis

NP-C is commonly undetected or misdiagnosed, often due to its highly variable clinical presentation characterised by a wide range of symptoms that individually are not specific to the disease.

Due to its challenging presentation the journey to diagnosis of NP-C can be long and frustrating for patients and their families. The average delay in diagnosis is five to six years from onset of neurological symptoms.

Think Again, Think NPC is an international campaign led by the INPDA, rolled out by local patient groups. A multidisciplinary advisory committee of leading clinical experts in the field of NPC provides advice and inputs content to ensure an effective campaign. It aims to improve the diagnosis of NPC by targeting specialist health care professionals who are currently unfamiliar with the condition and giving them the tools they need to recognize and act upon the symptoms of NPC.

Anyone can get involved and raise awareness of NPC. Visit the campaign website for more information and to join the campaign.

Watch the Think Again. Think NP-C campaign showreel

Think Again. Think NP-C Infographic

The infographic highlights key information about Niemann-Pick type C disease and the Think Again. Think NP-C campaign in an easy to understand and visually engaging way. Download it here and share with healthcare professionals – you could ask them to display it in their hospital department.

Join the Registry

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The Impact of NPC

The global community tell their stories...