What’s it all about?

"...Think Again. Think NP-C - help us to support earlier diagnosis of Niemann-Pick disease type C (NP-C), and ensure patients don't miss out on vital treatment and support..."

What is the Think Again. Think NP-C campaign?

Think Again. Think NP-C is an international campaign, which aims to support healthcare professionals unfamiliar with Niemann-Pick type C disease (NP-C) to recognise the key signs and symptoms of NP-C. This will help patients by speeding up diagnosis to ultimately optimise care and treatment outcomes.

Why is the Think Again. Think NP-C campaign needed?

NP-C is commonly undetected or misdiagnosed. This is 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. This campaign aims to reduce the length of time to diagnosis by supporting healthcare professionals to recognise the symptoms of NP-C in order to be able to Think NP-C.

Early diagnosis means patients can access support, which can improve their quality of life and the lives of those around them. Early diagnosis is also important as NP-C is a treatable disease. Treatment can help to manage the symptoms and can slow down the progression of the disease. Therefore, it is critical that we aim to achieve earlier diagnosis of NP-C.

Who is the Think Again. Think NP-C campaign targeted at?

The Think Again. Think NP-C campaign is targeted at healthcare professionals who might see a patient with NP-C, but are unfamiliar with NP-C and therefore are currently unable to Think NP-C. Once they suspect a patient has NP-C they can then refer that patient on to a specialist centre for diagnostic testing.

The Think Again. Think NP-C campaign is not aimed at those healthcare professionals who already know a lot about NP-C or who carry out the diagnostic tests to confirm a diagnosis of NP-C as they will most likely already be aware of NP-C.

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

References