These resources fall into two general categories. The first group lists websites that will provide access to information about a very broad range of disabilities, including rare disorders.
This site of Brain Injury Association of America offers information on research, professionals, and disability matters.
The PAS Center provides research, training, dissemination, and technical assistance on issues of personal assistance services (PAS). The PAS Center website provides online access to its many publications and newsletter. The information is sorted by audience. It also has links to other useful sites.
Cerebral Palsy Guidance was created to provide answers and assistance to parents of a child with cererbral palsy. Our goal is to reach as many members of the cerebral palsy community as possible, building up a network of support, as well as providing necessary assistance.
Cerebral Palsy Guide was written with parents of children recently diagnosed with CP in mind. We hope to answer any of the initial questions parents might have about their child's condition in a way that is easy to comprehend.
The website of Christopher and Dana Reeve Foundation is dedicated to curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy. It contains videos of Christopher Reeve and research findings.
This website offers information on epilepsy, epilepsy research, and advocacy.
The Genetic Alliance maintains a database to assist families in connecting with support and information about a very wide range of disabilities, organized by condition, organization, and service provided.
A wealth of information about rare diseases, including good links to other sites, NIH's Office of Rare Diseases' website also contains information about clinical trials and links to patient support groups. Included on the site is a massive alphabetical list of rare disorders, not linked at this time.
NINDS Disorders page is arranged alphabetically. Each page provides well-written and concise information about specific neurological disorders, and includes listings of support organizations and further web resources.
NORD is a long-time resource for information about rare disorders. It maintains a database with a information about over 1100 disorders; descriptive pages include include links to organizations that provide information, referral and support. NORD also maintains a database of organizations and one for orphan drugs.
Tourette Syndrome Association is the only national voluntary non-profit membership organization in this field. Our mission is to identify the cause of, find the cure for and control the effects of Tourette Syndrome. We offer resources and referrals to help people and their families cope with the problems that occur with TS. We raise public awareness and counter media stereotypes about TS. Our membership includes individuals, families, relatives, and medical and allied professionals working in the field.
Attention Deficit Disorder/ADD-ADHD
CHADD (Children and Adults with Attention Deficit Disorder)
CHADD's website is a good place to begin when gathering information about Attention Deficit-Hyperactivity Disorder. Their "FAQ" (Frequently Asked Question) and "Fact Sheet" pages are very helpful, and you can link to a local CHADD chapter if you are interested in their support groups and activities.
More information on ADHD and its issues from the National Attention Deficit Disorder Association.
This website of American Foundation for the Blind (AFB), a national nonprofit organization aims to expand possibilities for people with vision loss. It provides information on technology; information and tools for the professionals who serve people with vision loss, statistics on blindness and quick facts on eye conditions. It also provides links to other organizations related to visual impairments.