A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Wednesday, October 24, 2012

What is the NNPDF?

October is Niemann-Pick Disease Awareness Month.

Well, after my announcement yesterday, I figured I better explain a bit about the National Niemann Pick Disease Foundation (NNPDF).

To start off, the website is www.nnpdf.org.

The mission and goals:

The National Niemann-Pick Disease Foundation is a non-profit [501(c)(3)] organization that supports and promotes research to find a cure or treatments for all types of Niemann-Pick Disease and provides support services to individuals and families affected by the disease.

NNPDF's VISION is a world where Niemann-Pick disease is no longer a threat to a full and productive life for patients and their families. Medical professionals, thoroughly familiar with the disease, will promptly and accurately diagnose it early in the patients life, and then prescribe an appropriate therapy. Families affected by Niemann-Pick disease will not be devastated by the diagnosis or its impact on their lives. Individuals with Niemann-Pick disease will have the same chance as their siblings and peers to run and play, to hope and achieve, and to live out their dreams.


The NNPDF provides services to all individuals affected by Niemann-Pick Disease regardless of their ability to pay dues.  While we ask and hope that families will help the Foundation through personal contributions and fundraising initiatives, we do not require any payment for our services.  We hope this opens NNPDF to more individuals and families affected by Niemann-Pick Disease and who share our commitment to find treatments and a cure.

There are different membership applications: 1) immediate family and 2) extended family, community supporters, and friends.  These applications are available at the website.


The NNPDF provides lots of support to families (and others) of those affected.  The yearly Family and Medical Conference is (probably) the biggest gathering of those affected.  But there are also e-mail groups, newsletters, the website, support packets of information, the online store, the Facebook page, and the educational initiative.

But the NNPDF isn't alone in it's mission to support and promote research and providing support to those affected.  Here are some other international organizations:

  • International Niemann-Pick Disease Alliance (INPDA)
  • Canadian Chapter of NNPDF (CCNNPDF) (Canada)
  • Vaincre Les Maladies Lysosomales (France)
  • Niemann-Pick Selbsthilfegruppe (Germany)
  • Fundacion Niemann-Pick de Espana (Spain)
  • Niemann-Pick Disease Group (UK)
  • Associazione italiana Niemann-Pick (Italy)

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