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International Niemann-Pick Disease Alliance

Who We Are

NNPDF is the US member organization of the National Niemann-Pick Disease Alliance.

The International Niemann-Pick Disease Alliance (INPDA) is a global network of non-profit organizations, supporting persons affected by Niemann-Pick diseases (NPD). The alliance was formed in 2009 to provide a forum for patient groups and professionals working in the field of NPD.

In the 1990s, when a person was diagnosed with NPD they were told they would never meet anyone else affected, as the conditions are so rare. But people directly impacted by the disease – patients themselves, their family members and friends – began setting up support groups, connecting families and drawing in impassioned and dedicated people to fight their corner, determined that no family diagnosed with NPD should face the future alone.

Today, we have an international network of non-profit groups, supporting hundreds of families, and we continue to grow. By joining together through the INPDA, we give Niemann-Pick diseases a stronger global voice, and progress towards effective treatments for these conditions is accelerated.

Our Aims
The INPDA’s overall mission is to relieve sickness and distress among families affected by Niemann-Pick diseases worldwide.

We will achieve this by sharing expertise, knowledge and skills across our network, providing mutual support between patient groups, improving information and awareness of NPD, and stimulating research.

Our network enables connections, bringing together people who can make a difference for this group of devastating rare conditions.

For more information on what we’re doing to achieve these aims, see Our Work.

Learn more about the INPDA.

INPDA Executive Committee
President:  Sandy Cowie (Canada)
Vice President:  Joslyn Crowe (USA)
Executive Secretary:  Toni Mathieson (UK)
Executive Treasurer:  Isabel Hontanilla (Spain)
Executive Communications Officer:  Lisa Chavez (USA)

INPDA Newsletters

February 2022 INPDA Newsletter
October 2021 INPDA Newsletter
June 2021 INPDA Newsletter
February 2021 INPDA Newsletter
October 2020 INPDA Newsletter
June 2020 INPDA Newsletter
February 2020 INPDA Newsletter
October 2019 INPDA Newsletter

Pfrieger’s Digest

Pfrieger’s Digest is written by Frank Pfrieger of Niemann-Pick Selbsthiifegruppe (Germany) to provide an overview of the latest advances in Niemann-Pick disease based on recent scientific publications.

Pfrieger’s Digest – Issue 06/2022
Pfrieger’s Digest – Issue 05/2021
Pfrieger’s Digest – Issue 04/2021
Pfrieger’s Digest – Issue 03/2020
Pfrieger’s Digest – Issue 02/2020
Pfrieger’s Digest – Issue 01/2020

Supporting one another. Supporting our community.