The Cleveland Clinic does a great job of offering online Webinars on a variety of health topics. In September they have two that might be of interest to those with Hermansky-Pudlak Syndrome. The first one is on IPF. While this is pulmonary fibrosis of unknown origin, PF is similar across the board. I know if you're interested, you'll find something useful.
The other one that caught my eye is on advances in colonoscopy. Everyone starting at 50 needs one, but we HPS'ers sometimes have to get them a lot sooner than that, and sometimes need them more often than the usual person.
Neither one of these Webinars is HPS specific, so don't expect the doc to be able to answer your HPS-specific questions. But, general PF and colonoscopy questions should be okay.
If you choose to participate, please help us generate awareness of HPS in these communities by introducing yourself as an HPS patient.
Best of luck - here's the link to learn more - http://www.clevelandclinic.org/health/chatreg/Default.aspx