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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. The second category includes sites that focus on specific disabilities.
Any of the following websites can help families locate information about disabilities and disorders from A to Z. For additional information, consult the Health section of this website, particularly some of the medical databases that are available online.
There are multiple links to hundreds of diseases and disorders in this site maintained by the Karolinska Instituet, Sweden's only medical school. Many links are to non-North American sources in this very comprehensive resource.
This site of Brain Injury Association of America offer 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
This 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
Family Village's "Library" is a rich resource for locating information about disabilities, arranged alphabetically, and in a format like an old-fashioned card catalog. Each disability listing includes descriptions of the disorder, connections to websites, to listservs and to organizations that provide support.
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 Disease's 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.
In addition to the websites below, information about ADD and ADHD can be found in the links for Learning Disabilities, below.
The website provides information on books, videos, training programs, games, professional texts and assessment materials for ADD.
The website of Attention Deficit Disorder Resources has over 100 articles written by national ADHD authorities as well as adults with ADHD. Plenty of information for parents too. 100 plus links to ADHD-related websites.
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.
The CHADD site provides information on causes, symptoms and treatment of Attention Deficit Disorders (ADD). It also includes findings of research studies. It is a good resource for families, adults, educators, healthcare professionals and organizations involved in the care of individuals with ADD.
More information on ADHD and its issues from the National Attention Deficit Disorder Association.
This site provides information on diagnosis, treatment , and educational issues of individuals with AD/HD. It also discusses what it is like living with this condition.
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.
Founded in 1858, the American Printing House for the Blind (APH) is the world's largest nonprofit organization creating educational, workplace, and independent living products and services for people who are blind and visually impaired.
Deaf Linx is your resource for information on deafness, deaf culture, American Sign Langauge (ASL) and all other related topics. Deaf Linx firmly believes that deafness is not a disability, but a condition that produces a sub-culture that should be celebrated. Many people are unaware of all the accomplishments that deaf individuals have made and the unique ways in which they have come together to create a distinctive identity. Whether you are a deaf person or someone with hearing loss, looking for other individuals in your area, or you just want to learn about deaf culture or deaf society, our resources on deafness are for you.
This is the website of Gallaudet University in Washington, DC, the world leader in liberal education and career development for deaf and hard-of-hearing undergraduate students. It provides information on its outstanding graduate programs for deaf, hard-of-hearing, as well as hearing students, campus life , and student organizations.
The purpose of Helen Keller National Center HKNC), located in Sand Points, NY is to enable each person who is deaf-blind to live and work in the community of his/her choice. The HKNC website provides information about its programs and projects. It has listserv for professionals serving deaf-blind consumers (PSDBC).
For more than 100 years, Lighthouse International has been a leader in meeting the evolving needs of people who are dealing with, or are at risk for, vision loss and blindness. Through services, education, research, andadvocacy, the Lighthouse enables people with low vision and blindness to enjoy safe, independent and productive lives.
This site of NAD provides access to information on captioning, education, employment, housing, health care, transportation, American Sign Language (ASL), relay service, Cochlear implants, and how to become an interpreter. It also has information on numerous issues dealing with hearing aids.
The NCDB works collaboratively with families, federal, state and local agencies to provide technical assistance, information and personnel training.
The NCDB website provides online access to largest collection of information on deaf-blindness worldwide. It also has links to other disability related sites
The National Technical Institute for the Deaf is one of the eight colleges of Rochester Institute of Technology, a leading career-oriented, technological university recognized by U.S. News & World Report as one of America's "Best College Values," and by The Princeton Review as one of the top 20 colleges nationwide for "Best Career Services." More than 14,000 undergraduate students from around the world, including more than 1,300 who are deaf or hard-of-hearing, come to campus every year to take advantage of the benefits of an RIT/NTID education.
Perkins School for the Blind is located in Watertown, MA. This website provides access to webcasts, pictures of Perkins products, information on assistive technology, Perkins clearinghouse and Perkins on campus, community as well as international programs.
WonderBaby.org, a project funded by Perkins School for the Blind, is dedicated to helping parents of young children with vision impairments as well as children with multiple disabilities. Here you'll find a database of articles written by parents who want to share with others what they've learned about playing with and teaching a blind child, as well as links to meaningful resources and ways to connect with other families.
This website provides a history of the AAIDD. It also defines intellectual disability/mental retardation (ID/MR), lists resources, and provides links to other organizations dedicated to the cause of intellectual disabilities/mental retardation.
The Arc is a national non-profit organization serving families of individuals with mental retardation and other developmental disabilities. The site includes many informative articles and links to local Arc chapters. Their "Position Statements" are interesting reading.
A rich and comprehensive site, with links and links to information about Autism and Asperger's Syndrome. A collection of parent letters is featured in its "Advice to parents who discover their child is autistic" link.
ASA's Autism Info section is an invaluable introduction to autism and its issues. The site connects to local and state resources, as well.
Autism Speaks is the nation's largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.
This is a website of Best Buddies, a non profit organization dedicated to improving the quality of life for individuals with intellectual disabilities by creating opportunities for one-to-one friendships and integrated employment. It offers information on its many programs such as Best Buddies Middle School, Best Buddies College, E-Buddies, and Best Buddies Citizens.
This new website is a collaborative effort of California Department of Developmental Services and the University of California San Diego's School of Medicine. It is a collection of California-based information and programs on developmental disabilities. The primary goal of DDHealthinfo.org is to improve the health of individuals with developmental disabilities. Content includes: Medical Care Information, Autistic Spectrum Disorders, Resources for Families and CME/CE Credit for Healthcare Providers.
This site links to a world-wide network of organizations and resources for families of children with Down syndrome. It includes international resources and information in languages other than English, too. It has a good link to Down Syndrome Health Issues, a site written and maintained by a pediatrician with a child with Down sydrome.
The Interactive Autism Network (IAN) is an innovative online project bringing together tens of thousands of people nationwide affected by autism spectrum disorders (ASD) and hundreds of researchers in a search for answer.
The ICI at University of Minnesota aims to improve community support and social supports for individuals with developmental and other disabilities and their families. The ICI fulfills its mission through research, professional training, technical assistance, and publishing activities. The ICI website offers information on their many projects. It also has useful links.
This site, from the CDC (Center for Disease Control and Prevention), provides developmental milestones charts and fact sheets on various developmental disabilities, as well as tools and resources for families.
A good source of general information about Down syndrome, education, health and research issues. The site is easy to navigate and includes an information and referral service.
This is state affiliate of the national site, which provides education, networking and support programs and services. It is an excellent resource for information about Prader-Willi Syndrome.
The PCPID is dedicated to improving the lives of individuals with intellectual disabilities. This website of the PCPID contains its history, its goals, facts and research about Intellectual Disabilities/Mental retardation..0
This is the website of Special Olympics, a global nonprofit organization It aims to change attitude towards those with intellectual disabilities. Through year-round sports training and competition, it endeavors to empower those with intellectual disabilities in more than 180 countries. The site includes its history, annual reports and other relevant information.
This site provides information on living with spina bifida, prevention of spina bifida, and current research on this condition. It also has links to relevant sites such as National Council on Folic acid, Latex Allergy, National Center for Learning Disabilities, March of Dimes, and Kids' Camps.
This website aims to disseminate information on SIS, an evaluation tool developed by the American Association on Intellectual and Developmental Disabilities (AAIDD). The SIS provides a reliable framework to quantify the support needs of a person with an intellectual disability through a positive and thorough interview process.
This national UCP site will only link you to a local chapter, where you can find information about resources. It has no other content, but it can get you started.
This site is an excellent place to learn about dyslexia and other learning disorders. IDA is involved in policy and research, and the site hosts a bulletin board.
This site is an excellent place to learn about dyslexia and other learning disorders. IDA is involved in policy and research, and the site hosts a bulletin board.
This is THE source for information about learning disabilities. Easy to navigate and full of helpful information, LD Online is the first place to start when looking for resources on learning differences and ADD/ADHD.
In 2001, the Office of Special Education Programs (OSEP), U.S. Department of Education, showcased research papers on key issues in the identification and classification of students with specific learning disabilities. These papers were compiled into a book, Identification of Learning Disabilities: Research to Practice, published by Lawrence Erlbaum. The white papers are available online at this site for download.
NCLD's site contains on-line copies of their well-respected publications. These publications include listings of national and local resources. This is an important site to visit.
The National Center on Response to Intervention provides technical assistance support to each of the 50 states and 9 territories across the country. This website has articles on RTI such as tiered instruction, models of RTI, progress monitoring, implementation and planning.
This website of NCSPM has downloadable articles and PowerPoint presentations, on special education topics such accountability, progress monitoring, curriculum based measurements; data based decision making, and IEPs. The NCSPM project has come to the end of its five-year contract with the U.S. Department of Education, Office of Special Education Programs (OSEP). However, they plan to continue to maintain this site with all its valuable resources.
This website of NRCLD has tons of information on determination of learning disabilities and Response to Intervention (RTI). Has links to other sites on learning disabilities.
Non-verbal learning disabilities are often misunderstood. This site provides information for families with children with NLD and for adults, too. Its articles are important resources.
Rick Lavoie known for F.A.T. City. This site has his articles by Lavoie on self-competence and child with learning disabilities, tips to promote self esteem of children with learning disabilities, early signs of learning disabilities, controversial treatments of learning disabilities, links to relevant sites, and schedule of his workshops.
For information about learning disabilities, access to free publications and links to local resources, visit this site. It includes a message board and you can subscribe to their newsletter. The site excels in ease of navigation and accessible information.
This web page defines pre-referral interventions. It includes different terms that schools might use to refer to these interventions. There is also discussion on Response to Intervention (RTI).
The RTI Action Network is dedicated to the effective implementation of Response to Intervention (RTI) in school districts nationwide. Our goal is to guide educators and families in the large-scale implementation of RTI so that each child has access to quality instruction and that struggling students – including those with learning disabilities – are identified early and receive the necessary supports to be successful. The RTI Action Network is a program of the National Center for Learning Disabilities, funded by the Cisco Foundation and in partnership with the nation's leading education associations and top RTI experts
This is the website of ASHA. It provides online access to research briefs and articles on communication disorders
This site has links to assistive technology vendors, aphasia assessment materials, and other academic resources.
The AAC-RERC is a collaborative research group. The mission of the AAC-RERC site is to provide research based information and assistance to individuals who depend on augmentative and alternative communication.
This site includes information on augmented communication that can be accessed with a blink of an eye.
The ISAAC is dedicated to creating opportunities for individuals who communicate with little or no speech. This site offers a data base of AAC university courses around the world. It has links to ISAAC conference proceedings, to information about its peer reviewed journal, and archives of the Bulletin-the Information Exchange.
This website of the National Coalition on Auditory Processing Disorders aims to assist families and individuals affected by auditory processing disorders through public awareness, education, and support. It has several simulation activities, frequently asked questions (FAQs), and links to other relevant sites.
This site provides information on stuttering to teachers, researchers, parents, clinicians and employers.
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The resources on these pages are for your information. These listings are not necessarily comprehensive, nor are they an endorsement. If you find that any information is incorrect, if you would like to offer feedback or if you know of additional resources that may be helpful to include, please contact us.
This page was last updated September 26, 2011 .
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