In an effort to help those of you who are interested in using the Internet find information to help you and your child, I wanted to share some medical websites and a few listservs that might help you get the information you need. Frequently parents and professionals will contact me wanting information on various syndromes or conditions, information on physical management strategies related to children who may have feeding, motor, or other issues, or information on how to connect to other families whose children have the same condition or issue. The Internet has been invaluable in tracking down information. As a novice surfer I have found that a few well-placed "bookmarks" at individual websites makes my search much faster and much more productive. I also find listservs are a great place to connect with others and to learn about good websites. Remember, if you are not lucky enough to have Internet access at home or at work, check your public library.
Listservs are different from websites. They are set up to allow you to correspond with all the other members of a group (listserv subscribers) electronically. Most of the disability listservs do not charge you a fee to subscribe. There are a variety of listservs focused on specific topics mentioned on some of the websites listed below. You may want to check some of these out.
A website is a place that has a variety of information such as articles, databases, listservs, etc. Some of the best resources for finding medical information are those websites that connect families to other families. These include:
NOAH: New York Online Access to Health . Good information on eye disesases and conditions available in both English and Spanish. Includes a variety of general health topics, diseases, and alternative medicine information.
If you have found other sites or have comments on any of these, I would love to hear from you. Please write to Kate Moss, TSBVI Deafblind Outreach, 1100 W. 45th St., Austin, TX 78756, or phone (512) 206-9224, or email me at firstname.lastname@example.org.