Re: monitoring the website
Re: monitoring the website
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Posted by myer
on November 29, 2000 at 21:27:05:
In Reply to: monitoring the website posted by thanbey on October 14, 2000 at 11:13:19:
: Dear Tim,
: Thanks for your comments. The responses are now very hard for me to follow, but I do want to comment on one thing.
: Hepatitis C Outreach Project was founded as an outreach in the purist sense of the word. We are commited to providing acurate information about HCV by reaching into places where the need exists.
: We have gone to biker rallies, VA service offices, Doobie Brothers concerts and been on numerous commitees and boards to give information where it would not ordinarily form part of a mandate. And we have doing this for over 8 years.
: As part of this effort, there is a brochure downloadable from our website for anyone who wishes to use it to provide information to their community, public health department, or even food banks. Our primary interest is in prevention and testing. Nearly 90% of those who would test positive have not yet been tested! They have NO voice, no options because they live in ignorance of their disease. I want to change that.
: This site was found by accident. I have no relationship to the owners of the board. I was appalled at the lack of good information and began to come back to answer questions. I had only about one message a week to respond to, so it only took a few minutes of my time. It has picked up recently, and it takes more time. I am hoping someone will come here and begin to answer questions and then I will move on to other boards where I do basically the samer thing. I suspect, though, that most people are looking for more of a support relationship. This board has been information only, for the most part.
: If you are interested in working in a group (collaboratively), please volunteer and I will give you a board that has little action and very little sound information. There are quite a few out there now.
: The research I am involved in consists primarily of me nagging people who would not ordinarily have HCV on their radar screen (research-wise) to put it there. This week I struggle to fund a very famous neurologist to attend the Liver Diseases conference at the end of the month so he can get up to speed on this and offer his expertise to look into the very symptoms you are suffering. I have his attention and his scientific interest in this. He gets it! AND he is going to do some research including HCV as a variable.
: I haven't the funding to get him to the conference. There is no funding for these things. I won't give up until the last minute. Can you tell it has been a frustrating week?
You are one of the best programs we have. We inform those who are new to hep about your program. Yes you do give accurate information. THank you so much for all you do.