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October 2018 Newsletter: October Awareness Month

October 2018

October Niemann-Pick Disease Awareness Month

In conjunction with Niemann-Pick Disease Awareness Month the NNPDF hosted a webinar on October 10th entitled The International Niemann-Pick Disease Registry (INPDR) U.S. Launch led by Dr. Justin Hopkin, NNPDF Board Chair. Thank you to all that joined us and participated in the Q & A. Justin shared information about the INPDR process and how to enroll in the registry.


We are in the process of planning the upcoming webinar titled Clinical Trials and Expanded Access Program to be held later in the month. Watch for details to be shared soon.

We had a fantastic response to the Facebook profile picture request and it’s great to see you all posting them, along with sharing the Niemann-Pick Disease Quick Facts! Spreading awareness is key! Proclamations were declared in the states of Wisconsin and Maryland in recognition of Niemann-Pick Disease Awareness Month.

October Awareness Month is an important time of year for our community. We are proud to represent the national patient voice at every stage of the Niemann-Pick journey and we take our role as an unbiased advocacy leader seriously. To make a donation to NNPDF and help us continue delivering essential services to the community as the national patient organization, please click here.