NPC disease is rare, but the NPC community is vast.  The community continues to grow across the globe and many organizations have formed to help NPC communities collaborate.

This page is dedicated to the many NPC organizations all over the world. It also notifies the conferences available to meet and hear from NPC scientists, clinicians, and families and if the organizations support research grants.

Group of Kids

Foundations/Organizations That Host an Annual Conference

Please note all organizations listed below focus on NPC disease, though some also focus on Niemann-Pick Type A&B and other lysosomal storage disorders.

Ara Parseghian Medical Research Fund (APMRF) at Notre Dame

The APMRF is a non-profit organization dedicated to funding medical research projects to find a treatment for NPC disease.
  • Michael, Marcia, and Christa Parseghian Scientific Conference for Niemann-Pick Type C Research - June 2021
  • Grant Funding Program
  • Website

Australian NPC Disease Foundation Inc,

At Australian NPC Disease Foundation Inc, wellbeing is at the forefront of what we’re working together towards. We aim to support Australian patients of Niemann-Pick disease type C, and their families. Learn more about the positive impact we have and join us in bringing about positive change.

  • Australian NPC Disease Foundation Annual Gala Dinner and Conference - June, 2021
  • Grant funding program
  • Website

The International Niemann Pick Disease Alliance

The International Niemann Pick Disease Alliance (INPDA) is a global network of non-profit organisations, supporting persons affected by Niemann Pick Diseases (NPD).
  • The Loire Valley Meeting - every 2 years
  • Supports the International Niemann-Pick Disease Registry
  • Website

National Niemann-Pick Disease Foundation

The NNPDF is a non-profit, unbiased patient advocacy and family support organization dedicated to supporting and empowering patients and families affected by Niemann-Pick disease, through education, collaboration and research.
  • NNPDF Annual Family Conference - July/August, 2021
  • Grant Funding Program
  • Website

Niemann-Pick United Kingdom

Niemann-Pick UK (NPUK) is a charitable organisation dedicated to making a positive difference to the lives of those affected by Niemann-Pick diseases. They raise much needed awareness, provide practical and emotional support, advice and information and facilitate research into potential therapies.
  • NPUK Annual Family Conference - Fall, 2021
  • Grant Funding Program
  • Website

Additional International NPC Organizations

Additional United States-based NPC Organizations

Chase the Cure, Inc.

The journey to 501 (c) 3 approval spanned two states and two years as the members considered the best way to approach funding needs in the Niemann Pick Community.  There are several excellent foundations already raising funds for the cause and focusing on education and support for families.  Additionally there are foundations focusing on research.  Chase the Cure, Inc. is aligned with that corporate vision.  Too many fantastic ideas lack the funding needed to explore them and this generation of Niemann Pick Patients will lose the opportunity to benefit from them if we don't get to work.

Dana’s Angels Research Trust

Based out of Connecticut, Dana’s Angels Research Trust (DART), a 501(c)(3) organization with strictly charitable purposes, was founded by Phil and Andrea Marella to fund medical research, medical education, or medical or hospital care for the treatment or cure of Niemann-Pick Type C disease (NPC) or other similar genetic diseases.

Fight NPC

Funded by the Brian and Caris Chan Family Foundation and the Liferay Foundation, Fight NPC is an initiative dedicated to empowering families in their struggle against Niemann-Pick Type C. We know it's easy to despair in the face of such an aggressive, deadly disease, but recent medical breakthroughs have given NPC-affected families across the world hope for a better life for their children.

Firefly Fund

Based out of Austin, Texas, the mission of the Firefly Fund 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.

Hide & Seek Foundation for Lysosomal Disease Research

Based out of Southern California, the Hide & Seek Foundation for Lysosomal Disease Research is a non-profit foundation whose mission is to raise awareness of lysosomal disease. They seek to help affected individuals and their families by marshalling the necessary forces to advance research and clinical studies, and to find a cure.

Hope for Marian Research Foundation

Hope for Marian Research Foundation is a registered 501(c)(3) charitable organization intent on finding a cure for NPC.  The McGlocklin family live in Southern California and you can learn more about their daughter, Marian at their website

Support Of Accelerated Research for Niemann-Pick C

Support Of Accelerated Research for Niemann-Pick C, or SOAR-NPC, was created by parents and scientists as a grassroots response to the absence of treatments for this terminal disease. The number one goal of SOAR-NPC is to work as quickly as possible to find evidence-based treatments and ultimately a cure for Niemann-Pick Type C disease, a rare neurological illness.
If you would like your organization added to the website please email the NTA team.