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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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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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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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Contact: Donna Appell, President and Founder, HPS Network, (516) 922-4022 or e-mail: dappell@hpsnetwork.org. Date: Aug. 9, 2010 FOR IMMEDIATE RELEASE Discovery Health’s “Mystery Diagnosis” will feature one of the most common genetic disorders in the Puerto...
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Chediak-Higashi Syndrome is another rare type of albinism. It's a kind of cousin disorder to Hermansky-Pudlak Syndrome. The HPS Network, for now, serves as a kind of home for the Chediak-Higashi Association. Below is a really heartwarming story about...
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Contact: Donna Appell, President and Founder, HPS Network, (516) 922-4022 or e-mail: dappell@hpsnetwork.org. Date: Aug. 8, 2010 FOR IMMEDIATE RELEASE HPS Network supports conference on experimental lung disease research Oyster Bay, NY – The Hermansky...
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This is also from the American Thoracic Society's Washington letter today. It's an update on how the funding for various government programs impacting lung diseases and lung disease research is doing in the Senate. I couldn't copy the chart...
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The following was taken from the American Thoracic Society's Washington letter sent out today. I think it's great news for lungs everywhere. I would urge, however, that when the experts are thinking of cross-institutional projects, that they don't...
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This is really cool! It's a creative way to get the word out about pulmonary fibrosis. I love the idea! Many people with HPS get diagnosed with pulmonary fibrosis and don't know they have HPS. It's a real problem because often doctors want...
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This is a video for a grant - proof read please - it's a little rough as I've never done one of these before. Just make sure I didn't make a spelling booboo......after looking at it for hours I don't think I'd see anything anymore...
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Below is a link to a very good article that appeared in the COPD Foundation's e-newsletter. It's about some upcoming changes to Medicare rules regarding durable medical supplies - things like oxygen, CPAPs, TPN feeding etc. To be perfectly honest...
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I am very excited. For the first time I’m going to Puerto Rico for the HPS Puerto Rico conference. I’ve always wanted to go, but felt it wasn’t a good use of our money to send me because I don’t speak Spanish. It seemed wiser to send others who could...
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Below is another press release from NORD. I'm happy to see it and hope that the HPS Network can join this effort. There's got to be a happy medium between safety and dire need. Rare diseases simply can't live up to some of the current expectations...
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