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Below is a press release from our friends at the Coalition for Pulmonary Fibrosis. They are partnering with the American Thoracic Society and the Pulmonary Fibrosis Foundation to fund more grants to kick start more research on pulmonary fibrosis. This...
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I've been meaning to make note of this on the blog for a while now. In the last few years we had updated our literature to reflect the findings that the pulmonary fibrosis of HPS only seemed to occur in types 1 and 4. I had been made aware of a case...
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Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've...
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It's been a tough few weeks for all of us. I know it makes me feel better when I can see that our efforts are showing results and things are indeed moving forward. The following abstract is from the Journal of Respitory Critical Care Medicine. It's...
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Above is a photo taken last weekend. Maria, in the blue, has been a member of the Network for some time, but recently joined our yahoo group. She is just starting down the journey of seeking a lung transplant. It's a tough road and she'll need...
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Last week I blogged about some of the interesting papers I’d found on my latest troll through the medical papers (the ones I can get to anyway). One thing I left out, mostly because it didn’t fit with the topic at hand, were the papers I found where the...
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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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Sometimes when I'm having one of my down-in-the-dumps spells I have to take a little time to step back and look at the bigger picture. Although a week before conference isn't the most practical timing, to keep my head in the game when I feel like...
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Below is a press release I’m sure many in the HPS community will find of interest. To be honest, I waited a few days to post it because I wasn’t sure if I understood it right, and I wanted a chance to talk to some of the “brain trust” to figure out exactly...
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I thought I'd pass along the following press release from our friends at the Coalition for Pulmonary Fibrosis. Actually, they seem to pretty much be interested in idiopathic pulmonary fibrosis - a notion that will creep away as more is learned and...
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The following story appeared in the Washington Post. As lung transplants are a topic of interest to many in the Hermansky-Pudlak Syndrome community, I thought some of you might be interested in this information. Donna pointed the study out to me. Happy...
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The following article appeared on the Coalition for Pulmonary Fibrosis Web site. I thought it was a very nice summary of some of the major developments in pulmonary fibrosis research in the last year as well as what's on the horizon in the next year...
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I ran across this article by Dr. Gahl that is sort of an update to the journal article I have in my own files that's an overview of HPS. I'm only including the link because it is so long, but it gives a great overview, as of 2007, of all the HPS...
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Here's another peice of exciting news about Pirfenidone just out. It means that if the trials show that the drug is working, the FDA will work to get the approval process underway quickly. InterMune Announces Receipt of Fast Track Designation for...
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This is a report on one of the sessions that took place at the American Thoracic Society meeting. The Japanese trial is actually somewhat ahead of the trials in the United States - both the IPF trial and the HPS trial. It's so great to hear that the...
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