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I didn't get to chat with Nicole at conference. It's one of the down sides to running a conference. Often you're too busy making sure things are in order for the next event to chat with people as you'd like. I did, however, get to chat...
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The HPS Network has posted a new video under HPS Information. It's an interview with Dr. Seward, the only physician who has a private practice for HPS patients (and serves on our board of directors and scientific advisory board). The interview covers...
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Once every month or two I do a pretty exhaustive hunt for any papers published anywhere in the world on Hermansky-Pudlak Syndrome. Often I don’t understand them, but we as the Network try to track these things. We want to know who is researching what...
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Our techie friend Noel posted this to the HPS Adults listserv. I thought many of you would find this interesting, if not useful. Google is partnering with pharmacies to make it easier for patients to be able to pull up a full list of medications etc....
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Here's lesson two on the down and dirty, non-medical, explanation of lungs and how they work. Remember, I'm not a doc. But, I have run this by some of my brain trust to make sure I'm understanding what I'm reading well. I'm hoping...
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A while back the HPS adults listserv decided they wanted to study some of the problems associated with HPS in little, easy-to-understand chunks. The hope was that when we're at conference, we might have a better vocabulary and working understanding...
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Doing outreach for a rare disorder isn’t easy. First you have to overcome the lack of knowledge out there about HPS. Then you have to find creative ways to reach out to those who might be affected. And if you manage to do all of that, sometimes even then...
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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...
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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...
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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...
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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...
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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...
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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...
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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...
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