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Reviewed Resources:
1.Vocational Services Job Club at Regional Epilepsy Center : Effect of Lights on Seizures
FAQ discusses the relationship between flashing or repetitive lights or images and seizures. Contents reference the infamous "Pokemon incident" in Japan, in which seizures were induced among a number of Japanese children by flashing images contained in a television cartoon.
Purpose: Reference.
Audience: Patients.
Reference index:11
Price:Web site is free
URL:http://elliott.hmc.washington.edu/education/ask1.html
2.New Orleans Pompe disease info. hub
Pompe Disease, also known as acid maltase deficiency, is covered on this page, which is the work of a sufferer of the condition. It features a brief summary of the condition and a few other resources.
Purpose: Reference.
Audience: Patients.
Reference index:13
Price:Web site is free
URL:http://endpompesdiseasenow.org/
3.Neurons and their Growth Cones
The goal of this site includes increasing interest in the development of the nervous system and the regeneration of damaged nerve cells. It includes downloadable movies of growth cones relevant to development
of the nervous system.
Purpose: Reference, Simulation.
Audience: Medical Doctors, Medical Students.
Reference index:70
Price:Web site is free
URL:http://gramercy.ios.com/~pab9/
Download URL:http://gramercy.ios.com/~pab9/Movie.html
4.Yahoo! Groups : bian
The Brain Injury Association Network is a support group of brain injury survivors, families, caregivers, and healthcare professionals; it conducts an e-mail list via the Yahoo! Groups service. The list has a relatively low volume of messages, and this site serves as its homepage. A FAQ is available that outlines the guidelines for the group, and an archive of past messages is available for those who choose to become members.
Purpose: Reference.
Audience: Patients.
Reference index:17
Price:Web site is free
URL:http://groups.yahoo.com/group/bian/
5.Yahoo! Groups : chiari
This is the homepage and online archive of an e-mail support group for sufferers of chiari malformation, a neurological condition affecting the brain stem. List is very active, and the archive is correspondingly very large.
Purpose: Reference.
Audience: Patients.
Reference index:17
Price:Web site is free
URL:http://groups.yahoo.com/group/chiari/
6.Yahoo! Groups : chiari-kids
This is a low-traffic, members-only online e-mail support group for children and teens with Chiari malformation.
Purpose: Reference.
Audience: Patients.
Reference index:8
Price:Web site is free
URL:http://groups.yahoo.com/group/chiari-kids/
7.Yahoo! Groups : duanes
This is the homepage of an e-mail discussion list hosted by Yahoo! Groups for those affected by Duane retraction syndrome, a neurological eye movement disorder. Find member photos, a public archive of past messages, and instructions for joining the group.
Purpose: Reference.
Audience: Patients.
Reference index:12
Price:Web site is free
URL:http://groups.yahoo.com/group/duanes/
8.Yahoo! Groups : hydranencephaly
This page hosts subscription information and an archive of messages for a very active discussion on the topic of hydranencephaly, a neurological birth defect.
Purpose: Reference.
Audience: Patients.
Reference index:10
Price:Web site is free
URL:http://groups.yahoo.com/group/hydranencephaly/
9.Yahoo! Groups : lissencephaly
This page contains subscription information (and, for members only, an archive) for a mailing list on the topic of lissencephaly, a neurological birth defect also known as "smooth brain." List offers support but not medical advice.
Purpose: Reference.
Audience: Patients.
Reference index:4
Price:Web site is free
URL:http://groups.yahoo.com/group/lissencephaly/
10.Yahoo! Groups : menkes_kinky_hair
This is the homepage for the menkes_kinky_hair discussion/support group hosted by the Yahoo! Groups e-mail list service. It is a place for parents and friends of children affected by the genetic condition known as Menkes (or "Kinky Hair") syndrome, in which copper metabolism fails. Exchange words of support and understanding with others who know what you're going through. Details on signing up for the low-traffic (20-80 messages per month) list are available.
Purpose: Reference.
Audience: Patients.
Reference index:9
Price:Web site is free
URL:http://groups.yahoo.com/group/menkes_kinky_hair/
11.Yahoo! Groups : MVPS_for_women
This is the homepage of an e-mail group hosted by Yahoo! for women living with mitral valve prolapse syndrome (MVPS). It includes a brief introduction to the group and directions for subscribing.
Purpose: Reference.
Audience: Patients.
Reference index:23
Price:Web site is free
URL:http://groups.yahoo.com/group/mvps_for_women/
12.Yahoo! Groups : RSD_UK
This is the homepage for the e-mail group RSD_UK, which is a UK-based support group for those living with reflex sympathetic dystrophy. Announcements, membership information, and a message archive (for members only) are all available on this page.
Purpose: Reference.
Audience: Patients.
Reference index:21
Price:Web site is free
URL:http://groups.yahoo.com/group/RSD_UK/
13.Yahoo! Groups : SB-Parents
Subscription information and an archive of several years' worth of messages are housed on this homepage of a fairly active e-mail discussion group for parents of children with Spina Bifida.
Purpose: Reference.
Audience: Patients.
Reference index:17
Price:Web site is free
URL:http://groups.yahoo.com/group/SB-Parents/
14.Yahoo! Groups : scic
Spinal Cord Injury Caregivers is the name of this e-mail forum hosted by Yahoo! Groups. It allows all those who are familiar with the challenges faced by caregiving parents, friends, and partners to exchange messages of support and advice. List traffic has become quite robust; it now features anywhere from 100 to 700 messages each month. Details on signing up are available, and a link leads to a personal page describing the function of the list in depth.
Purpose: Reference.
Audience: Patients.
Reference index:11
Price:Web site is free
URL:http://groups.yahoo.com/group/scic/
15.Yahoo! Groups : SoTBI
Several hundred messages are exchanged each month on the SoTBI (Survivors of Traumatic Brain Injury) list, which is hoted by Yahoo! Groups. This page is its Web presence, outlining membership guidelines, documenting list traffic, and offering an archive of past messages to those who are already members. To become a member, TBI survivors much send an introduction to the list owner.
Purpose: Reference.
Audience: Patients.
Reference index:21
Price:Web site is free
URL:http://groups.yahoo.com/group/SoTBI/
16.Yahoo! Groups : WAGR
This is the homepage of the e-mail support group for families of children with WAGR Syndrome; it hosted by Yahoo! Groups. Group is very active, exchanging upwards of 300 e-mails per month.
Purpose: Reference.
Audience: Patients.
Reference index:23
Price:Web site is free
URL:http://groups.yahoo.com/group/WAGR/
17.Yahoo! Groups : wernicke_korsakoff_syndrome
Folks affected by Wernicke-Korsakoff syndrome (WKS) find support from others in similar situations via this e-mail group hosted by the Yahoo! Groups service. WKS is a manifestation of severe thiamine deficiency; it is generally caused by chronic alcoholism. It causes neurological symptoms that, if untreated, lead to severe psychosis and death. Friends and family of those with the condition commiserate via this group's low-volume e-mail list.
Purpose: Reference.
Audience: Patients.
Reference index:3
Price:Web site is free
URL:http://groups.yahoo.com/group/wernicke_korsakoff_syndrome/
18.Yahoo! Groups : WilsonsList
Though not especially busy in recent years, the "WilsonsList" e-mail list hosted by Yahoo! Groups is intended to provide a support forum for those affected by the genetically transmitted Wilson's disease, a condition in which excessive copper is not properly removed from the body. Sign up for the list on this page, and, once you do, feel free to peruse the small archive.
Purpose: Reference.
Audience: Patients.
Reference index:7
Price:Web site is free
URL:http://groups.yahoo.com/group/WilsonsList/
19.Thieme Medical and Scientific Publishers
Thieme publishes over 125 journals and more than 400 books and electronic products related to medical and other science-related disciplines yearly. In addition to works concerned with perinatology, sports medicine, reproductive medicine, respiratory, critical care medicine, and others, new titles in neurosurgery, radiology, ENT, orthopedics, ophthalmology, and audiology/speech and language will be appearing throughout 2001. A product index allows you to search the catalogue for medical books and journals, CD-ROMs, videocassettes, and more.
Purpose: Reference.
Audience: Medical Doctors, Medical Students.
Reference index:1110
Price:Web site is free
URL:http://www.thieme.com/
20.Think First
The Think First Foundation is a Canadian non-profit group dedicated to educating children and young adults about the importance of preventing serious brain and spinal cord injury. Site explains the various programs it offers for young people of different ages. The programs were developed in response to research showing that behavior modification is easier to effect among children. The "Kids' Club" section of the site contains a variety of pages for children, including comics, safety tips, desktop wallpaper images, and "cool links." Details on volunteering with the group and making donations are also offered.
Purpose: Reference.
Audience: Patients.
Price:Web site is free
URL:http://www.thinkfirst.ca/
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