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• Hermansky-Pudlak Syndrome isn't just a Puerto Rican problem

  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... Posted Aug 10 2008, 01:41 AM by Living on the frontlines Filed under: HPS Network News, photos, HPS 101

• Breathing Better, Pulmonary Rehabilitation

  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... Posted May 27 2008, 02:09 PM by Living on the frontlines Filed under: HPS Network News, HPS 101

• Medic Alert – a must for those with Hermansky-Pudlak Syndrome

  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... Posted Nov 07 2007, 01:16 PM by Living on the frontlines Filed under: HPS Network News, HPS 101