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November 2016 Newsletter


October Awareness Wrap Up

What a month!  We had 70 people request profile pictures for Facebook and we cannot even count how many of you shared our daily posts.  Thank you so much for continuing to raise awareness!

One of our daily posts highlighted a new social media outlet for the NNPDF.  Yes… we are now on Pinterest.  We will be posting ideas and pieces of information that may be a quick resource when you are searching for information.  At this time we’ve created the following boards:


Click here to follow us on Pinterest!

  • 2015 October Awareness
  • 2016 October Awareness
  • Information for School Age
  • Recipe for Success Cards
  • Grief and Loss
  • Resources for families

More to come as this is just the beginning!

Join our NNPDF Blog!

Included with the role out of our new website our NPD families can now subscribe by email to our NNPDF Blog! Our Blog (Foundation Newsline) is where we post new information that comes out of the Central Office.  This information includes press releases, other updates sent to the central office, NNPDF Board Meeting notifications and other important NNPDF notices. Subscribe now to get blog post email notifications by following the easy steps below.


Shop and Give

If you enjoy shopping online, you can do so AND support the NNPDF! How? Simply click the links below, register, and choose the National Niemann-Pick Disease Foundation as your supporting cause. With every purchase these supporters donate a portion of your purchase to the NNPDF. You shop… They give. Don’t forget to share these links with your friends!

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International Niemann-Pick Disease Registry

The International Niemann-Pick Disease Registry (INPDR) is striving to create a registry that will redefine the future of Niemann-Pick Disease research.

Through data held in the registry, treatments and therapies can be developed or refined in order to make a positive impact on the lives of Niemann-Pick patients across the globe.

We need your help!

Your knowledge of Niemann-Pick disease, as a person with NPD or as someone caring for a person with NPD, means your participation will directly contribute to the value of the registry. With your patient information in the registry, you will be in a position to help aid progress in the understanding and potential treatment of the Niemann-Pick diseases.

For enrollment information click hereinpdr-website-link-icon

Research Updates

Niemann-Pick Parkinson’s Research Study for
ASMD Patients and First Degree Family Members

Click here for more information on how to take part in this research study.


Quinn Madeleine Foundation Establishes First Ever
Niemann-Pick Diagnostic Carrier Screening Program

Click here to view the entire press release.

UPDATE: As posted on the Quinn Madeleine Foundation Facebook Page on November 1, 2016

I wanted to alert the NPC community to an opportunity for the same diagnostic screening that The Quinn Madeleine Foundation is providing to ASMD families.

Our lab, Baby Genes, does offer the same test for NPC1 and NPC2 genes and asked me to relay their willingness to work with you all on a discounted schedule. Contact Director of Development Max Truesdel at If you have any questions about QMF’s working relationship with them, please don’t hesitate to reach out to


Press Releases and Updates
Received at the NNPDF Central Office

For press release and update information click the links below.

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9 8.16

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Phone: 920-563-0930  |  Toll Free: 877-287-3672 |


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