Viewing 1 post (of 1 total)
  • Author
    Posts
  • Anonymous
    Participant
    Post count: 93172

    Lynn asked a good question about posting a web site address on the BB without asking if it was OK first. Here is where we are coming from on that. There are many sites on the internet that provide information that is inaccurate, wrong or just plain out and out fiction and has no basis in fact. This site is run by the National Graves’ Disease Foundation. We have an obligation to provide education and support on Graves’ disease. We have had site address posted before and when we went to check them out they were not acceptable to our mission statement (which can be viewed on the NGDF home page).

    I know of at least six sites that post incorrect information and they come and go. We are here for the long haul. We try to review sites for correctness before we recommend them. We try to review books before adding them to our list of recommended reading. We just had someone send us a request to advertise on the site and we turned them down.

    We have also began getting e-mails from some posters that they are receiving e-mail to go to sites and buy products. We need to know about these when they happen. Need to know if they are isolated incidents or if someone is targeting our posters for SPAM mail.

    Jan and I as on-line facilitators do not post as often but we read every day and track down things like website leads. We have been doing this for three years since we started this BB site. It has become a part of our daily lives. We are here to try to protect you from information that may be wrong or harmful. So even though you may not see us post as often know we are there every day. Looking out after you and making sure that you get current information.

    We have asked Nancy to assign daily assistant on-line facilitators to keep track of the day to day postings. They are to make sure every post gets an answer either on-line or by e-mail. We (Jan and I) are still there reading every day but do not answer every post. There are not enough hours in the day for that and after three years it is hard to keep up.

    Sorry got on a soap box there for a minute. If you want to submit a web site send it to us and we will review it and say yes or no… Bottom line is this is a NGDF BB and we are responsible for what goes out to the world. All we ask is your help on this to make our job easier.

    Jake
    On-line facilitator

Viewing 1 post (of 1 total)
  • You must be logged in to reply to this topic.