Welcome to the NPC Community Page
If you've found your way here, you're not alone. The NPC Community is a haven for individuals, families, and caregivers affected by Niemann-Pick Disease Type C. Here, we unite to share experiences, offer support, and stand together in the face of this rare and challenging journey.
Ara Parseghian Medical Research Fund
The Ara Parseghian Medical Research Fund (APMRF) at Notre Dame is a non-profit organization dedicated to finding a treatment or cure for Niemann-Pick Type C (NPC) disease—a genetic, cholesterol storage disorder that primarily strikes children with death occurring before or during adolescence. The Parseghian Fund is named in honor of Ara Parseghian, the much beloved and well-known Notre Dame Football Coach, whose three youngest grandchildren were diagnosed with NPC in 1994.
National Niemann-Pick Disease Foundation
Supporting One Another. Supporting Our Community.
Chances are you haven’t heard much about Niemann-Pick disease. It’s a rare disease, but maybe not as rare as we think as it is difficult to diagnose. Explore this area to discover more about NPD, it’s diagnosis and treatment, and the work that NNPDF is conducting.
Niemann-Pick UK (NPUK)
Niemann-Pick UK (NPUK) is a charitable organisation dedicated to making a positive difference to the lives of those affected by Niemann-Pick diseases. We raise much needed awareness, provide practical and emotional support, advice and information and facilitate research into potential therapies.
We are a small charity with less than five hundred members, the work we do is funded entirely through fundraising activities and successful grant applications. Our strength, therefore, comes from the dedication of our much valued families, members, benefactors and volunteers who work with tremendous effort and loyalty in support of the charity.
International Niemann-Pick Disease Registry (INPDR)
We document the Niemann-Pick patient experience to advance research and improve lives.
By joining the INPDR and sharing your experience, you’ll be helping us improve disease understanding, influence patient care and support global research efforts.
Australian NPC Disease Foundation Inc
he Australian NPC Disease Foundation (ANPDF) aims to give hope, support and connection to those affected by Niemann-Pick disease type C (NP-C) and Acid Sphingomyelinase Deficiency (ASMD) in Australia. We provide the opportunities through conversations, events and our disease-specific conference held in Victoria with an underlying focus on research for better treatments.
Firefly Fund
Our mission is to fund and support the research and education necessary to accelerate a cure for rare neurodegenerative genetic diseases that affect children and currently have no cure. We have begun our journey with a focus on Niemann-Pick Disease Type C.
Hope For Marian
WE GIVE A VOICE TO PATIENTS AROUND THE WORLD ADVOCATING UNIVERSAL ACCESS FOR LIFE SUSTAINING MEDICINES FOR THIS GENERATION OF CHILDREN AND ADULTS FIGHTING NPC.