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All Blog Posts
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Since its debut, the episode of Mystery Diagnosis featuring Hermansky-Pudlak Syndrome has aired a number of times. Each time we’ve had inquiries from people who identified with the story and would like to be tested for HPS. It’s been an interesting group...
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Rep. Joseph Crowley (D-NY) and Fred Upton (R-MI) have formed the Rare and Neglected Disease Caucus. A Congressional caucus is formed by members of Congress to provide a forum for specific issues or legislation of interest to a specific group. A number...
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The entire trip Puerto Rico had the prettiest clouds. The photos don't do it justice. It doesn't even begin to compare with being there in person. I loved the light in the sky here. This was taken out the car window.
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My trip to Puerto Rico was AWESOME! The only flaw was that it was too short. The HPS Network Puerto Rico did a fantastic job organizing outreach and the conference. It was a wonderful day and I was so grateful for the opportunity to meet so many wonderful...
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I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know...
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I am so overdue posting these pics. This is an unofficial HPS get together in Boston. It was Franie the Cat and Maria's birthday. I've been meaning to post since before Puerto Rico. I'm just THAT far behind. I love these pics - and this get...
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Cesily Ramos, author of the just-released book Embracing the Mystery, is donating $5.00 from the sale of each book to the Hermansky-Pudlak Syndrome Network. Embracing the Mystery is a collection of Ramos’s personal reflections and poetry inspired by her...
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Three shows devoted to albinism will broadcast this week. On Tuesday, National Geographic Channel "Explorer" series covers the killing of people with albinism in Tanzania. On Wednesday , an Internet radio talk show will discuss Growing...
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The following message appeared on one of the listservs I belong to: As so many of my readers are either HPS'ers or other folks with low vision/blindness, I thought some of you might be interested. It looks like a great opportunity to me. Colleagues...
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If you missed the show, it will air again on Saturday, Aug. 21st at 5:00 pm.
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Last night was a big night in HPSland. Our own Karen Tillman's diagnosis story was featured on the popular Discovery Health show, "Mystery Diagnosis." It was emotional to watch because I know Karen very well and because we share these HPS...
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This was a quick trip and it was all business. We didn't sight see, but I wanted so badly to have some photos that were a sort of flavor of what Puerto Rico looks like. These photos were all taken from the car window. I don't know what it was...
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The HPS Network Puerto Rico team appeared on WABA 850 am radio in Puerto Rico. Hilda, Mervin and Rinitza (I know I just messed up that name.......I'll check it with Yeidyly.) did the talking. Donna and Ashley sat in a chair in the corner so I ended...
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