by Kate Moss, TSBVI Deafblind Outreach
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:
- The Family Village Project: This is one of my all-time favorite websites for just about everything I need to find.
- Texas School for the Blind & Visually Impaired Not that I'm bragging, but this is a great website with wonderful links to other important websites. Always an easy door to start through.
- DB-Link This site focuses on deafblindness. It also has a related listserv.
- NAPVI Home Page This site has much to offer, but is especially useful for connecting to other families.
Other websites staff in Outreach have found for getting information on specific disabilities or conditions include:
- Karolinska Institute Library - Diseases, Disorders & Related Topics
- Internet Resources for Special Children (IRSC) Good links to other sites for general and specific information.
- Neurology WWW Resources . A nifty site for links to all sorts of medical information and resources.
- 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.
- National Organization for Rare Disorders . Good brief listing of rare syndromes and disorders.
- National Institute of Neurological Disorders and Stroke . This has a great search engine to find information about neurological issues, but can be a bit technical.
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 email@example.com.