Doctors and patients don’t always speak the same language. Understanding how a family member might describe a symptom of NP-C could support earlier diagnosis.

Think NP-C. Talk NP-C

What is Think NP-C. Talk NP-C?

Think NP-C. Talk NP-C is a subsidiary campaign to Think Again. Think NP-C, which focuses on how a patient with undiagnosed Niemann-Pick type C disease (NP-C) or their carer might describe their symptoms to a healthcare professional, to increase clinical recognition.

As with other rare diseases, the signs and symptoms of NP-C are highly variable and not specific to the disease, which means that NP-C often goes undetected or is misdiagnosed.1

By assisting physicians to recognise the symptoms of NP-C as they are described in everyday language and link them to the disease, earlier diagnosis and earlier access to care is achievable.

Think NP-C. Talk NP-C symptom cards

Think NP-C. Talk NP-C symptom cards have been developed using real-world patient insights and descriptions for the following key symptoms of NP-C:

  • Ataxia
  • Dysarthria
  • Gelastic Cataplexy
  • Hepatosplenomegaly
  • Organic Psychosis
  • Vertical Supranuclear Gaze Palsy (VSGP)

Click on the images below to download each of the symptom cards:

Download the VSGP symptom card Download the Gelastic Cataplexy symptom cardDownload the Organic Psychosis symptom cardDownload the Ataxia symptom cardDownload the Dysarthria symptom cardDownload the Hepatosplenomegaly symptom card

References

  1. Patterson M, Hendriksz, Walterfang M, et al. on behalf of the NP-C Guidelines Working Group. Recommendations for the diagnosis and management of Niemann-Pick disease type C: an update. Mol Genet Metab 2012;106(3):330-344.

 

 

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