Understands.
Supporting One Another.
Supporting Our Community.
Living with Niemann-Pick disease brings unique challenges, questions, and experiences for individuals and families at every stage of their journey. Whether you are seeking answers following a new diagnosis, exploring treatment options, or navigating the ongoing complexities of the disease, NNPDF is here to provide trusted resources, information, and a supportive community. Together, we are connecting families with the knowledge, support, and hope they need along the way.
Just Been Diagnosed?
Take a breath.
You’ve found the right place. We’ll walk you through what Niemann-Pick disease is, what to expect, and how to connect with families who’ve been exactly where you are right now.
About The Disease
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OUR MISSION
Every family facing Niemann-Pick disease deserves answers, support, and hope—from the day of diagnosis onward.
NNPDF funds research, educates families and clinicians, and connects the Niemann-Pick community so that no one navigates this disease alone.
IMPACT AREAS
EDUCATION
Plain-language resources for families, and clinical guidance for the doctors who treat them.
RESEARCH
Funding the studies and clinical trials working toward better treatments — and one day, a cure.
SUPPORT
One-on-one connection,
community events, and resources for the entire family.
ADVOCACY
Working on behalf of the
community for newborn screening, access to treatment, and policy
change.
WHO WE FIGHT FOR
Every family has a story. Here’s why ours matters.
Behind every dollar raised and every study funded is a family like this one — holding on to hope, together.
Stay Connected.
Stay Informed.
Become an NNPDF member for the latest research updates, event invitations, and a direct line to the community.