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Educational Resources
Here are some further resources related to Niemann-Pick type C disease (NP-C) that you may find useful:
NP-C patient survey:
Journey to Diagnosis - specialist reports
In 2010 a patient survey was carried out with parents and carers of patients with NP-C in six European countries. The survey results provided a detailed picture of their experience of the journey to diagnosis, the physical and emotional impact and the importance of early diagnosis in order to access support before, during and after reaching a diagnosis.
The survey results have been compiled into four reports aimed at neurologists, psychiatrists, metabolic disease specialists and pediatricians. The main body of the reports is the same for each specialist group, however targeted introductions and case reports have been included for each speciality. A slide set has also been developed that you may find useful for sharing these survey results with other healthcare professionals. In order to download any of the materials, please click on the icons below:
| PDF Documents |
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[4 downloads]  |
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Journey to Diagnosis
A Report for
Neurologists |
Journey to Diagnosis
A Report for
Pediatricians |
Journey to Diagnosis
A Report for Metabolic Disease Specialists |
Journey to Diagnosis
A Report for
Psychiatrists |
| Power Point Templates |
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[1 download]  |
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Journey to Diagnosis
NP-C Patient Survey Results Presentation |
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| Video Resources |
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| Patient Stories |
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Calum's Story:
Calum is a loving four year old boy who was diagnosed with
NP-C almost two years after birth... read more
Hollie and Annie's Stories:
Hollie is a bright and bubbly four year old girl living with NP-C.
In the film, her mother Helen talks about... read more
Adam's Story:
Adam is a positive and active twenty-three year old who
showed no symptoms of NP-C until he reached... read more
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