The Public Advisory Roundtable held a patient session called Meet the Experts. Essentialy, there were global experts on various types of lung disease and the patients could sit around a table with them and ask questions. Of course, we didn't think anyone with HPS would show up but us - we don't know of anyone with HPS in New Orleans - but Dr. Gochuico from the NIH agreed to man our table anyway. We wanted to be there, even though we knew we wouldn't have a lot of patients like some of the other lung diseases, because we wanted to brand HPS. We wanted to be included in the thought process so that we too have a seat at the table. It also gave us some time to talk to Dr. Gochuico. They have some new ideas about the pulmonary fibrosis of HPS. I don't want to get into them because they are just that - ideas that haven't yet been investigated or tested. still, it's so great to know the cogs of thought are still turning and new ideas are being bantered around at NIH. NIH will be asking some of us to come back to help investigate these ideas, but it won't be masses of people. Instead, they'll carefully select certian patients based on their medical histories and the likelihood that they would have what the researchers want to look at. Just be ready to volunteer should you be needed. The Public Advisory Roundtable held a patient session called Meet the Experts. Essentialy, there were global experts on various types of lung disease and the patients could sit around a table with them and ask questions. Of course, we didn't think anyone with HPS would show up but us - we don't know of anyone with HPS in New Orleans - but Dr. Gochuico from the NIH agreed to man our table anyway. We wanted to be there, even though we knew we wouldn't have a lot of patients like some of the other lung diseases, because we wanted to brand HPS. We wanted to be included in the thought process so that we too have a seat at the table. It also gave us some time to talk to Dr. Gochuico. They have some new ideas about the pulmonary fibrosis of HPS. I don't want to get into them because they are just that - ideas that haven't yet been investigated or tested. still, it's so great to know the cogs of thought are still turning and new ideas are being bantered around at NIH. NIH will be asking some of us to come back to help investigate these ideas, but it won't be masses of people. Instead, they'll carefully select certian patients based on their medical histories and the likelihood that they would have what the researchers want to look at. Just be ready to volunteer should you be needed.
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