Welcome Patients/Families/Caregivers/Physicians of Niemann Pick Type-C. This webpage was designed to be a resource for all those affected by NPC disease, that consolidates actual experiences and conversations from patients and their families into one place. We hope you find this site helpful as you navigate your journey in NPC, and if you have anything to add please let us know!

Omaya Reservoir / Intrathecal Port

November 5, 2021

Question:  are there any NPC patients that were able to keep & use their Omaya reservoir longterm? J’s had to be removed a month after it was put in because of infection back in 2013. Now one of her doctors wants us to consider putting another one in so she can get cyclodextrin again without…

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