HPS Awareness Day was created 7 years ago to give the HPS community one special day to focus on unity and awareness. It is the one day our WHOLE community can feel empowered to share their HPS story and reach new people.

Hermansky-Pudlak Syndrome (HPS) is a RARE, genetic, multi-system disorder characterized by albinism, visual impairment, and a platelet dysfunction that results in prolonged bleeding. Additional complications include inflammatory bowel disease, kidney disease, and the fatal lung disease: pulmonary fibrosis, currently there is no cure.

The Hermansky-Pudlak Syndrome (HPS) Network was founded by the Appell family in Long Island, New York after their young daughter was diagnosed with HPS. They did not want any family to feel as isolated as they felt and wanted to find and support families while advancing the understanding of this very rare disease. This organization started with one family and now supports families worldwide who are affected by HPS.

Our mission is to provide education and vital support programs to individuals and families with Hermansky-Pudlak Syndrome while striving for improved care and innovative research on our journey to a cure.

For HPS Awareness Day we come together as a community to do a "6 Minute Walk". A 6-Minute Walk is a diagnostic tool used by pulmonologists to measure lung health for those who have or are at risk of developing lung disease like Pulmonary Fibrosis. Even though our “6 Minute Walk” on HPS Awareness Day is intended to be a fun, easy, casual walk, we chose to acknowledge the “6-minute” timeframe in honor of those who are impacted by lung disease. No matter where you are in the world, you can join the HPS community and do a 6-minute walk on or around April 6th.

We walk for HPS Awareness, our community, the future generations, those who need oxygen, those waiting for new lungs, and those no longer with us.

Please consider donating this April 6th to help us find a cure!!

HPS Awareness Day

APRIL 6TH