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September 2018 Newsletter: October Awareness Month

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September 2018
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October Niemann-Pick Disease Awareness Month

October is Global Niemann-Pick Disease Awareness Month! This is a great opportunity to raise awareness and educate others about NPD. This year’s theme is Supporting Families, Uniting Our Voice, Embracing Hope. 

Here are 4 ways to get involved:

1.  The NNPDF will be offering personalized Facebook profiles pictures to help you spread awareness to your friends and families throughout the month of October. Please send all Facebook profile requests to Jill at jbeirl@nnpdf.org

In your request please be sure to include:

  •  Your loved ones photo
  •  Your loved ones first name (as you would like it to appear)
  •  NPC or ASMD
  •  In honor of or In memory of 

2.  Do you want to be featured on a Quick Facts post on social media? If so, please let us know and we may use your photo (or your loved ones photo) on one of our daily Niemann-Pick Disease Quick Fact posts during the month of October.

3.  Building on our Conference theme of Supporting Families, Uniting our Voices, and Embracing Hope,  we will deliver two exciting webinars for which we have received many requests by the community. We are excited that Dr. Justin Hopkin, Board Chair, will present on the International Niemann-Pick Disease Registry on October 10th at 8:00 pm EST/ 5:00 pm EST. We will also host a webinar on Differences between Expanded Access and Clinical Trials later in the month. Registration and speaker details to follow!

4.  We encourage you to educate your local and state-wide communities on Niemann-Pick Disease by obtaining a Proclamation in your state. For information or assistance on the easy steps to do this, contact nnpdf@nnpdf.org. Click here for information and ideas for sponsoring Niemann-Pick Disease awareness and fundraising events.

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