Stories from the battle to cure Hermansky-Pudlak Syndrome, and other observations about every day life
Tuesday, October 07, 2014
Hundred People Search
We have added a new member to the patient registry. This now puts us at 88 people to go on this year's Hundred People Search. Yes, that is behind where we usually are, but we didn't have a conference in Puerto Rico this year. We usually pick up a lot of new members there. Keep up the outreach - there are developments coming for which this will be hugely important.