NOAH AOC

A big thanks to Lisa who created the map above for future HPS Network presentations. One problem we encounter doing outreach for Hermansky-Pudlak Syndrome is that too often people believe it’s a syndrome that only happens to people with albinism of Puerto Rican background. That’s just not true. Yes,...

This photo is of the Breathing Better event hosted by the Public Advisory Roundtable of the American Thoracic Society - the photo was taken by the show's official photographer. On Saturday, before the “guts” of the American Thoracic Society conference got underway, the ATS Public Advisory Roundtable...

A recent story shared by a fellow HPS’er really brought home, once again, why people with Hermansky-Pudlak Syndrome really do need to wear medic alert identification. A few weeks ago this particular HPS’er was involved in a car accident. He’s okay now, but in the accident he was injured, bleeding, and...