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Information about Specific Disabilities

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.

Listings of Disorders

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.

Alphabetic List of Specific Diseases/Disorders
http://www.mic.ki.se/Diseases/alphalist.html

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.

Family Village Library
http://www.familyvillage.wisc.edu/library.htm

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.

Genetic Alliance
http://www.geneticalliance.org/

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.

National Institute of Health -- Office of Rare Diseases
http://rarediseases.info.nih.gov/

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.

Natl Institute Neuro Disorders/List of Disorders
http://www.ninds.nih.gov/disorders/disorder_index.htm

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.

National Organization for Rare Diseases (NORD)
http://www.rarediseases.org/

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.

Attention Deficit Disorder/ADD-ADHD

In addition to the websites below, information about ADD and ADHD can be found in the links for Learning Disabilities, below.

Attention Deficit Disorder Resources
http://www.addresources.org

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 (Children and Adults with Attention Deficit Disorder)
http://www.chadd.org/

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.

National Attention Deficit Disorder Association
http://www.add.org/

More information on ADHD and its issues from the National Attention Deficit Disorder Association.

Developmental Disabilities

The Arc
http://www.thearc.org/

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.

Autism Resources
http://www.autism-resources.com/

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.

Autism Society of America
http://www.autism-society.org/

ASA's Autism Info section is an invaluable introduction to autism and its issues. The site connects to local and state resources, as well.

Developmental Disabilities Resources for Healthcare Providers
http://DDHealthinfo.org/

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.

Down Syndrome Home Page
http://www.nas.com/downsyn/

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.

National Center on Birth Defects and Developmental Disabilities
http://www.cdc.gov/ncbddd/autism/actearly/

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.

National Down Syndrome Society
http://www.ndss.org/

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.

Prader-Willi California Foundation
http://www.pwcf.org/

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.

United Cerebral Palsy
http://www.ucpa.org/

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.

Learning Disabilities

International Dyslexia Association (IDA)
http://www.interdys.org/

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.

LD Online
http://www.ldonline.org/

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.

National Center for Learning Disabilities
http://www.ncld.org/

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.

Non-Verbal Learning Disabilities
http://www.nldline.com/

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.

Schwab Foundation for Learning
http://www.schwablearning.org/

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.

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 July 18, 2008 .