PHYSICAL DISABILITIES SITES
Brain Injury Association (BIA) http://www.biausa.org/The Brain Injury Association (BIA) is a non-profit organization focused on disseminating information on brain injuries (BI). The site includes links to other sites related to BI separated into categories. In the Media Library, the user may view a variety of media materials related to BI. Also, in the Media Library is the BI Resource Center which uses a touch screen system to provide information related to BI. The BIA provides descriptions of BI as well as information on the prevention and treatment of BI.
Children with Spina Bifida: A Resource Page for Parents http://WWW.Waisman.Wisc.Edu/~rowley/sb_kids.htmlxThe Children with Spina Bifida (SB) page provides links to other sites related to SB. It links to articles and descriptions of SB. This site also links to organizations, clinics and hospital web sites as well as mailing lists, newsgroups, and chat rooms. The user may access resources related to research, articles, and conferences related to SB.
Curbcut.com http://www.curbcut.com/
The Hub is a site intended to provide a link to information for people in wheelchairs. The topics include home modifications, wheelchairs, health and rehabilitation, sexuality, sports, legal rights, travel, parenting, and women's issues. Two other topics, people and hope, provide the person in a wheelchair with support. The links include publications, books, journals, companies, web pages, discussion groups, and mailing lists related to the specific topics.
Epilepsy Foundation of America (EFA) http://www.efa.org/
The Epilepsy Foundation of America (EFA) is a non-profit foundation with a network of affiliated organizations. EFA provides information and referral services which include FAQs (Frequently Asked Questions) and epilepsy links. Other services include a bookstore of publications for families and health professionals as well as Epilepsy USA, an on-line publication. The site also provides information about EFA research, advocacy, and education. The site also provides a children's guide to epilepsy in the Kid's Corner.
Muscular Dystrophy Association (MDA) http://www.mda.org.au/
The Muscular Dystrophy Association (MDA) Australia is an organization focused on providing information and research on muscular dystrophy (MD) and related disorders. The MDA link presents a list of international contacts as well as international MD links including the MDA USA. The user can obtain FAQs (Frequently Asked Questions) about MD and descriptions of MD disorders. The site also provides a glossary of terms related to MD.
National Arthritis & Musculoskeletal & Skin Diseases Information Clearinghouse (NIAMS) http://www.nih.gov/niams/This clearinghouse is supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) which is one component of the National Institutes of Health (NIH). It provides general information, information about research programs, organizational/personnel listings, and employment opportunities. The NIAMS site also links to other biomedical resources and scientific research databases.
National Neurofibromatosis Foundation (NNFF) http://www.nf.org/
The National Neurofibromatosis Foundation (NNFF) is a non-profit medical foundation dedicated to individuals and families affected by the neurofibromatoses (NF). The NNFF site provides information about NF for patients and families as well as for healthcare professionals and physicians. NNFF publications and newsletters, research programs, and clinical care programs are available at the NNFF site. The user may link to other local and international affiliates of NNFF.
National Spinal Cord Injury Association (NSCIA) http://www.spinalcord.org/The National Spinal Cord Injury Association (NSCIA) works to develop better programs and services and acts as community advocates for people with disabilities. At the Resource Center, fact sheets about spinal cord injuries are available. The user may also link to the NSCIA publications catalog, the NSCIA bookstore, the HealthSouth Rehabilitation System for service options, and other Internet resources related to spinal cord injuries. The Newsroom provides articles, announcements, and stories related to disabilities and spinal cord injury.
National Tuberous Sclerosis Association (NTSA) http://www.ntsa.org/
The National Tuberous Sclerosis Association (NTSA) is a non-profit organization which provides support to victims of tuberous sclerosis (TS) and offers education to the public and professional communities. In the Waiting Room, the user can find brochures about TS, information about the NTSA newsletters, and support information. The Clinic contains a listing of TS Clinics by state, brochures, a seizure chart, a TS reference list, and a book list for more information. The Library provides recommended readings, a listing of pharmaceutical companies, and a glossary of terms. The NTSA site also provides additional links related to TS and other related disorders.
Neurological Services at Massachusetts General Hospital/Harvard http://neurosurgery.mgh.harvard.edu/mghns-hp.htmThis Home Page provides links to clinical units at Massachusetts General Hospital/Harvard. The units include the Epilepsy Surgery Unit, the Pediatric Neurosurgery Unit, and the Neurogenetics Unit. The Home Pages for each unit contains an extensive list of links related to the diseases and disorders treated by each unit. The links include Web pages, discussion groups, newsgroups, mailing lists, and publications. The Epilepsy Surgery Unit Home Page provides information about epilepsy for patients, families, and caregivers. The site links to the Epilepsy Link List which provides information about the types, diagnosis, and treatment of epilepsy. The Pediatric Neurosurgery Unit Home Page provides information about spina bifida (SB), hydrocephalus, syringomyelia, myelodysplasia, pediatric brain or spine tumors, and other developmental neurosurgerical disorders. The Neurogenetics Unit Home Page provides information about neurofibromatosis, tuberous sclerosis, Von Hippel-Lindau Disease (VHL), hydrocephalus, and tumors of the brain, spine, and other peripheral nerves. The site links to: a) the National Neurofibromatosis Foundation which provides information about symptoms and characteristics, diagnosis, management, programs, publications, and upcoming events related to neurofibromatosis;(c) Cody and Jordan's Page which provides information about causes, symptoms, treatment, and disorders related to tuberous sclerosis; and (d) the VHL Family Alliance Homepage which provides information about symptoms, diagnosis, DNA testing, diseases, treatment, and publications related to VHL.
Spinal Cord Injury (SCI): A Guide for People with SCI and Their Families http://www.cais.com/naric/search/The NARIC Resource Guide provides a listing of major publications, organizations, and other resources related to SCI. The Resource Guide has resources for medical, daily living, physical, assistive devices, funding, and recreational issues. It also lists organizations, periodicals, searchable databases, and research focused on SCI.
Spinal Cord Injury (SCI) Resources http://www.eskimo.com/~jlubin/disabled/sci.htmThe SCI Resources is part of Jim Lubin's DisABILITY Resources on the Internet. The SCI Resources links to mailing lists, home pages, newsletters, fact sheets, pamphlets, magazines, and bulletin boards related to SCI. The links include associations, professionals, hospitals, and resource lists.
Traumatic Brain Injury (TBI) Model Systems Program http://www.tbims.org/The Traumatic Brain Injuries (TBI) Model Systems Program site provides facts and figures related to TBI and its program. At the library, the user may obtain information about publications, reference lists, videos, and cassettes related to TBI topics. The TBI Model Systems Program site also links to other TBI related web sites. The sites include TBI associations and support groups. The topics include rehabilitation, employment, cognitive rehabilitation, assistive technology, neuropsychology, government, independent living, legal, and medical resources.
Tourette Syndrome Association http://members.tripod.com/~tourette13/
This page provides general and specific information about Tourette Syndrome, a chatroom, and links to many great sites with regards to special needs.
National Organization for Rare Disorders (NORD) http://www.pcnet.com/~orphan/
NORD is an organization of more than 140 not-for-profit voluntary health organizations serving people with rare disorders and disabilities. NORD maintains a confidential patient networking program that allows the exchange of information and mutual support among individuals and families who are affected by the same rare disorder. The user can obtain information about upcoming events, the NORD newsletters, grants, and regional developments. It links to organizations, support groups, and health related web sites.
National Rehabilitation Information Center
http://neurosurgery.mgh.harvard.edu/mghns-hp.htmThe National Rehabilitation Information Center (NARIC) is a library and information center on disability and rehabilitation. Funded since 1979 by the National Institute on Disability and Rehabilitation Research (NIDRR), NARIC collects and disseminates the results of federally funded research projects. NARIC's document collection, which also includes commercially published books, journal articles, and audiovisuals, grows at a rate of 250 new documents per month.
United Cerebral Palsy Association, Inc. (UCPA) http://www.ucpa.org/United Cerebral Palsy Association (UCPA) is a national health organization that promotes inclusion of persons with disabilities. The UCPA site provides information about innovative projects and advocacy for inclusion of persons with disabilities. The Resource Center presents research fact sheets and links to disability resources.
Washington University Comprehensive Epilepsy Program http://www.neuro.wustl.edu/epilepsy/
The Washington University Comprehensive Epilepsy Program Page provides a link to information about epilepsy including anti epileptic medication, epilepsy surgery, and diagnosis. It provides links to support groups and organizations, centers, and discussion groups and mailing lists related to epilepsy. The site also links to other resource pages focused on epilepsy.