NOAH AOC

A big thanks to Lisa who created the map above for future HPS Network presentations. One problem we encounter doing outreach for Hermansky-Pudlak Syndrome is that too often people believe it’s a syndrome that only happens to people with albinism of Puerto Rican background. That’s just not true. Yes,...

While at the American Thoracic Society meeting in Toronto I did learn a few new things that I wanted to pass on – I might not fully understand the science but I don’t think keeping an eye on these things will do anyone any harm. In one of the sessions (as was also the case last year) the need to keep...

This photo is of the Breathing Better event hosted by the Public Advisory Roundtable of the American Thoracic Society - the photo was taken by the show's official photographer. On Saturday, before the “guts” of the American Thoracic Society conference got underway, the ATS Public Advisory Roundtable...

A topic came up for discussion this week on the HPS Adults listserv. What can I say, you never learn everything there is to know about HPS. The discussion concerned getting permanent eye liner applied. Eye make up in particular can sometimes be a little tricky to put on if your vision isn’t so great...

This is Ivette from Puerto Rico. I’ve probably misspelled her name, so anyone out there, please correct me. She is our inspiration. I’m always so happy to see her every year. She’s got headphones on because she’s listening to the Spanish translator during a session. Ivette has the lung disease of Hermansky...

One of the interesting tools I’ve built into my blog is the ability to see the search terms people use to find it. Often, they’ve plugged in some burning question about HPS, and likely not found it easily on this blog. I have no idea who they are or how to reach them to give them the answer. So, here...

A recent story shared by a fellow HPS’er really brought home, once again, why people with Hermansky-Pudlak Syndrome really do need to wear medic alert identification. A few weeks ago this particular HPS’er was involved in a car accident. He’s okay now, but in the accident he was injured, bleeding, and...