Hermansky-Pudlak Syndrome Awareness Day is observed worldwide every April 6 to highlight Hermansky-Pudlak syndrome (HPS), an extremely rare genetic disorder characterized by albinism, visual impairment, and platelet dysfunction. The day was established in 2019 by the Hermansky-Pudlak Syndrome Network, which provides education and support to individuals with HPS and their families. The date commemorates the incorporation of the HPS Network in 1995. Activities on this day have included fundraisers, movie nights, parties, conferences, and virtual events aimed at increasing understanding of the syndrome. HPS affects approximately one in 500,000 people globally, with a notably higher prevalence in Puerto Rico, where it impacts about one in 1,800 individuals. The syndrome can lead to serious complications, including lung fibrosis, which is the most common cause of death among affected individuals.
April 6: Hermansky-Pudlak Syndrome Awareness Day
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