Stories from the battle to cure Hermansky-Pudlak Syndrome, and other observations about every day life
Tuesday, September 20, 2016
Hundred People Search Update
We've added three more HPSers to the HPS patient registry in the last few weeks. This puts us at 81 to go on the Hundred People Search (HPS). Please encourage anyone you know with HPS to register, even if they don't want to be involved beyond that. It is a way to let research know we are here, and we want a CURE!