I thought some of the blog readers with pulmonary fibrosis might be interested in this. The Coalition for Pulmonary Fibrosis holds patient symposiums around the country. They are much larger than the HPS Netowrk because they are a sort of unbrella group for pulmonary fibrosis. When they had a symposium in New York, they recorded it for broadcast on the Web. You can download the doctor slide presentations as well as the audio from the presentations. I know I must sould like I'm beating a dead horse, but the discussion focuses on IPF. Once again, the only difference between IPF and the pulmonary fibrosis of HPS is that we know our pulmonary fibrosis is caused by a genetic condition. One day the "I" in IPF is going to go away. There are several causes for pulmonary fibrosis, and the more we learn the more we'll understand about those causes. Generally, pulmonary fibrosis will be linked to either environmental factors, or to genes.
Enough said. If you'd like to download the info, the link is: http://www.videonewswire.com/event.asp.
It sounds like most of the patients at this event had relatively advanced pulmonary fibrosis. This is often the case with people that don't have HPS, and thus never knew they were at risk. They tend to get diagnosed later. (Not that lots of HPS'ers don't get diagnosed only when their fibrosis is quite advanced.)
The discussion talks about what pulmonary fibrosis is, treatment options and some of the work of the Coalition.
One of the docs. Dr. Padilla, is also very familiar with the pulmonary fibrosis of HPS. She also serves on our scientific advisory board.
Enough said. If you'd like to download the info, the link is: http://www.videonewswire.com/event.asp.
It sounds like most of the patients at this event had relatively advanced pulmonary fibrosis. This is often the case with people that don't have HPS, and thus never knew they were at risk. They tend to get diagnosed later. (Not that lots of HPS'ers don't get diagnosed only when their fibrosis is quite advanced.)
The discussion talks about what pulmonary fibrosis is, treatment options and some of the work of the Coalition.
One of the docs. Dr. Padilla, is also very familiar with the pulmonary fibrosis of HPS. She also serves on our scientific advisory board.
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