Just a quick update. As regulars know, this past March the HPS Network launched the Hundred People Search (H.P.S.). Too often people with HPS go undiagnosed, or misdiagnosed, and the consequences can be life threatening. Outreach has always been one of our main priorities – to help people get diagnosed. This year, however, we’re challenging our membership to take on the outreach challenge. Get the word out about HPS, what it is, and why testing is important for people with albinism. It isn’t that we want to find anyone with HPS. It’s that we know there are people out there that have HPS and don’t know it. Since they don’t know, they are at risk in the event of a serious trauma or surgery, and they don’t have the advantage of knowing early so that they can take advantage of any cutting-edge treatments that might help.
Last week we enrolled another new person on the HPS patient registry – thus to meet our year goal we’ve got 87 more HPS’ers to find.