Stories from the battle to cure Hermansky-Pudlak Syndrome, and other observations about every day life
Thursday, September 08, 2016
Hundred People Search
I'm a bit behind on updating the Hundred People Search. In the last few weeks, we have added two new HPSers to the HPS patient registry. If you know anyone with HPS who is not a member of the Network, please encourage them to join - even if they don't want to participate in any other way. We need to prove to research that we are out here, and that we NEED A CURE!