Every year after conference we start the Hundred People Search (HPS) all over again. It isn't that we ever want to find anyone with HPS. Frankly, we'd all be happy at the HPS Network if we went out of business! It's our goal and dream. The truth is, however, that there are people out there with HPS that don't know it. That can be dangerous. It can even be life threatening in an emergency. And, there are people out there with HPS who are diagnosed, but don't know about the HPS Network. Because HPS is so rare, they are not likely to hear about the latest science, or clinical trials etc. from their own physicians. It is also, for many of us, an incredible thing to be able to talk to people who get it - and get it all. Not just the albinism, or the low vision or the bowel disease or the lung issues or the bleeding, but what it is like to cope with some or all of these things together. I think people really underestimate that. I made friends at my hospital during m
Stories from the battle to cure Hermansky-Pudlak Syndrome, and other observations about every day life