Stories from the battle to cure Hermansky-Pudlak Syndrome, and other observations about every day life
Friday, October 24, 2008
100 People Search update
This week we added two new HPS'ers to the HPS family and patient registry. That puts us at 49, over the halfway mark. But, we've only got about a third of the year left before the next conference. We can't let our guard down on outreach. It's our hope that early intervention will help HPS'ers live long and happy lives because they'll have access to preventative care and the latest research.