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 is Ivette from Puerto Rico. I’ve probably misspelled her name, so anyone out there, please correct me. She is our inspiration. I’m always so happy to see her every year. She’s got headphones on because she’s listening to the Spanish translator during a session. Ivette has the lung disease of Hermansky...