Stories from the battle to cure Hermansky-Pudlak Syndrome, and other observations about every day life
Thursday, January 08, 2015
Hundred People Search Update
We've added another HPSer to the patient registry. We are now at 85 to go this year. That is way behind where we usually are, but we have focused more on science this year and less on outreach. It is important to get the word out about HPS though, especially now with a new drug in the picture.