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Rare Disease Day

Rare Disease Day

2019 Rare Disease Day Global Faces of Niemann-Pick Disease

NNPDF is proud to be part of the Global Faces of Niemann-Pick Disease project. Every year on Rare Disease Day the spotlight is placed firmly on all rare diseases, giving us the opportunity to come together to further collective awareness and look forward with renewed hope for effective therapies and treatments. This year, we join together with the International Niemann-Pick Disease Alliance (INPDA), a group which brings together Niemann-Pick disease member organizations from 15 different countries across the world, committed to raising this awareness every day.

This past month NNPDF has gathered pictures from all you across the United States and joined our international NPD families to visually strengthen our presences and fight against NPD through this Global Faces of Niemann-Pick Disease project. This map shows faces of our US community as well as community members from around the world. We show our ASMD and NPC together, united as one disease across the globe. Today, on Rare Disease Day, we show that though we are a rare community, Niemann-Pick disease has no boundaries and together we support one another throughout the Niemann-Pick journey. Thank you to those of you who participated in this global event.

As the U.S. member organization of the International Niemann-Pick Disease Alliance, we are proud to partner with our colleagues to strengthen the visibility of Niemann-Pick Disease across the states and globally, and in promotion of Rare Disease Day. To learn more about Rare Disease Day visit

2/28/2019 jjb