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Resources, part 3

There are over 1,100 rare disorders according to the National Organization for Rare Disorders (NORD). We have limited this set of resources to the more common disorders and the ones with more public awareness. We also include items that have been submitted for the list by the A-SIG Discussion list members. If you find a link that is no longer active or has moved, please notify the Webmasters.

Part 1: Updated Sunday May 04 2008

Accessible Travel Adaptive Technology Aging Allergy and Asthma Alternative Medicine Alzheimer's Disease and Dementia Amyotrophic Lateral Sclerosis (Lou Gehrig's Disease) Aphasia Architectural, Environmental, and Product Design Arthritis Asperger's Syndrome and Autism

Part 2: Updated Sunday May 04 2008

Assisted Living, Clothing, and Rehab Equipment Products Assistive Technology

Part 3: Updated Sunday May 04 2008

Attention Deficit Disorder Behavior and Social Interaction Blood Diseases and Disorders Book Lists Brain Injury Cancer Cerebral Palsy Chromosome 18 Syndrome Chronic Fatigue Syndrome Cognitive Disability Cornelia de Lange Syndrome Cystic Fibrosis Deep Vein Thrombosis Developmental Disabilities Diabetes Disability Etiquette

Part 4: Updated Sunday May 04 2008

Disability Organizations Disability Sites for Children and Families Disaster Resources Down Syndrome Drug/Alcohol Addiction Dwarfism Dyslexia Dystonia Education Emergency Preparedness

Part 5: Updated Sunday May 04 2008

Employment Epilepsy Ergonomics and Musculoskeletal Disorders Facial Difference Fetal Alcohol Syndrome Fibromyalgia Fragile X Syndrome Guillain-Barré Syndrome / Chronic Inflammatory Demyelinating Polyneuropathy Health Care for Women Hearing Loss Heart Attack and Angina Huntington's Disease Hyperlexia Hypermobility, Ehlers-Danlos, and Marfan Syndrome Internet Accessibility / Usability Invisible Disabilities Klinefelter Syndrome

Part 6: Updated Sunday May 04 2008

Language Learning and Speaking Legal & Human Rights Resources Literacy: Reading and Print Disabilities Literature Lung Diseases Lupus Magazines and Periodicals Medical Links

Part 7: Updated Sunday February 24 2008

Mental Health Mucopolysaccharidoses & Mucolipidoses Multiple Sclerosis Muscular Dystrophy and Ataxia Obsessive-Compulsive Disorder Orthopaedic Information Pain Management Parkinson's Disease Performance Arts / Theater Pervasive Developmental Disorders Phobias Physical Impairment Polio Prader-Willi Syndrome Rehabilitation and Physical Therapy Restless Leg Syndrome Rett Syndrome

Part 8: Updated Sunday May 04 2008

Scoliosis Service Dogs and Therapy Animals Sight / Vision Loss Sjögren's Syndrome Sleep Disorders Spasmodic Torticollis / Dystonia Speech Spina Bifida Spinal Cord Injury Spine and Neck Pain Sports and Recreation Stress Stroke Treatment and Recovery

Part 9: Updated Thursday March 20 2008

Tay-Sachs Disease Technical Communication Thyroid Disorders Tourette Syndrome Traumatic Brain Injury Turner Syndrome Usability and Human Factors Vision Loss William's Syndrome

See also: Suggested Reading book lists.

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Attention Deficit Disorder

• Adult (ADD) What is it?
• Attention Deficit Disorder Association adult resources and help
• Attention Deficit Disorder (ADD)
• Chesapeake ADHD Center of Maryland specializes in the diagnosis and treatment of ADHD (ADD), learning disorders, and related conditions
• Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD)
• Internet Resources for Special Children: Attention Deficit/Hyperactivity Disorder
• Living with ADD resources and forum
• oneADDplace general adult ADD symptom checklist

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Behavior and Social Interaction

• Disability Etiquette Handbook from the City of San Antonio, Texas Planning Department and the Disability Advisory Committee
• How to donate old PCs to the disadvantaged

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Blood Diseases and Disorders

• National Heart, Lung, and Blood Institute (NHLBI) Diseases and Conditions Index (DCI)

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Book Lists

• Suggested Reading List: Accessibility
• Suggested Reading List: Disability
• Suggested Reading List: Internet Accessibility / Usability
• Suggested Reading List: Usability

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Brain Injury

• Brain Injury Association of America
• Brain Injury Community
• Brain Injury Resource Foundation FAQ treatment and rehabilitation products
• Neurologic Rehabilitation Institute at Brookhaven Hospital The Neurologic Rehabilitation Institute (NRI) offers multiple mid- and long-term programs and services for adults age 18 and older with a primary diagnosis of Traumatic Brain Injury or other acquired neurological problem. NRI is housed within Brookhaven Hospital, located in Tulsa, Oklahoma, and also consists of two transitional living centers within short distances of the hospital.
• Neuropager an idea developed by Hamid Sami, MD, MSc.

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Cancer

• American Association for Cancer Research (AACR)
• American Association for Cancer Research (AACR) Journals
• American Cancer Society
• Asbestos and Mesothelioma Center
• Canadian Cancer Society/Société canadienne du cancer
• Cancer.gov
• Cancercare
• Institute of Cancer Research, London, UK
• International Agency for Research on Cancer (IARC)
• International Union Against Cancer, Geneva, Switzerland
• Mayo Clinic Cancer Center
• Mesothelioma: asbestos cancer
• Sloan-Kettering – Memorial Sloan-Kettering Cancer Center
• The Breast Cancer Site

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Cerebral Palsy

• Cerebral Palsy Ability Center in the District of Columbia, Maryland, and Virginia area
• Cerebral Palsy Resources
• United Cerebral Palsy (UCP)

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Chromosome 18 Syndrome

• Chromosome 18 Registry and Research Society

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Chronic Fatigue Syndrome

• Chronic Fatigue Syndrome (CFS) / Myalgic Encephalopathy (M.E.)
• Chronic Fatigue Syndrome Resources

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Cognitive Disability

• Cognitive Disability in Human-Computer Interaction (HCI) Education
• Cognitive Disabilities Part 1: We Still Know Too Little, and We Do Even Less"
• Cognitive Disabilities Part 2: Conceptualizing Design Considerations
• Cognitive Rehabilitation and Assistive Technology Resources
• Cognitive Disability / Mental Retardation Who to Contact, Where to Go to Chat with Others, Learn More About It, Web Sites, International Web Sites, Non-English Resources
• Hypergraphia, a driving compulsion to write (or create in another media such as painting, blogging, etc.).
• PEAT™ (Planning and Execution Assistant and Training System) is a program designed to provide cueing and planning assistance for people with memory and attention disorders.
• Cognitive Disability Devices: ISAAC™ fully individualized cognitive prosthetic system
• Temporal Lobe Epilepsy is epilepsy that is characterized by abnormal electrical activity in the temporal lobe of the brain. This activity does not cause grand mal seizures; rather, it causes unusual behaviors and patterns of cognition.

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Cornelia de Lange Syndrome

• Cornelia de Lange Syndrome Foundation

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Cystic Fibrosis

• Cystic Fibrosis Foundation
• Cystic Fibrosis Reference and Fact Sheet
• Cystic Fibrosis Resources
• Cystic Fibrosis Resources
• What is Cystic Fibrosis?

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Deep Vein Thrombosis

• Deep Vein Thrombosis from the American Academy of Orthopaedic Surgeons (AAOS)
• Deep venous thrombosis from the U.S. National Library of Medicine and the National Institutes of Health MedlinePlus, Medical Encyclopedia
• Economy Class Syndrome (Deep Vein Thrombosis)

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Developmental Disabilities

• Administration on Developmental Disabilities (ADD) U.S. Government organization responsible for implementation of the Developmental Disabilities Assistance and Bill of Rights Act of 2000, known as the DD Act. ADD, its staff and programs, are part of the Administration for Children and Families, of the U.S. Department of Health and Human Services.
• American Association on Intellectual and Developmental Disabilities (AAIDD) (formerly AAMR) provides information about the mental retardation and disabilities field.
• Developmental Disabilities Resource Center provides leading-edge services that create opportunities for people with developmental disabilities and their families to participate fully in the community.
• Vanderbilt Kennedy Center for Research on Human Development aims to improve the quality of life of persons with disorders of thinking, learning, perception, communication, mood, and emotion caused by disruption of typical development.
• J. P. Das Developmental Disabilities Centre University of Alberta Department of Educational Psychology [Canada]
• National Association of Councils on Developmental Disabilities (NACDD) is a national, member-driven organization consisting of 55 State and Territorial Councils. NACDD advocates and continually works towards positive system change on behalf of individuals with developmental disabilities and their families.
• NY State Commission on Quality of Care and Advocacy for Persons with Disabilities is an independent, New York State government agency charged with improving the quality of life for New Yorkers with disabilities and protecting their rights.
• President's Committee for People with Intellectual Disabilities (PCPID) provides advice concerning intellectual disabilities to the President or the Secretary of Health and Human Services. PCPID also provides advice to the President concerning expansion of educational opportunities, promotion of homeownership, assurance of workplace integration, improvement of transportation options, expansion of full access to community living, and increasing access to assistive and universally designed technologies.

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Diabetes

• American Association of Diabetes Educators
• American Diabetes Association
• Canadian Diabetes Association
• Children with Diabetes
• Diabetes Public Health Resource
• International Diabetes Federation
• Juvenile Diabetes Research Foundation International
• National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

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Disability Etiquette

• A Table of acceptable and unacceptable terms courtesy of the San Antonio Disability Access Office.
• Ability Magazine
• ADA Information, City of Sacramento
• Australian Government: Language Makes a Difference – Use of non-discriminatory language [Australia]
• Copyright (Visually Impaired Persons) Act 2002 [United Kingdom]
• Disability is Natural: "The mission of this site is to encourage new ways of thinking about disability and to help create a society in which all people are valued and included." This site includes a discussion of People First Language, which should be very valuable to technical communicators.
• FCC Section 504 Handbook chapter 4. DISABILITY ETIQUETTE
• Guidelines for Reporting and Writing about People with Disabilities Appropriate Terminology
• Hearing Concern.org [United Kingdom]
• Japanese Society for Rehabilitation of Persons with Disabilities (JSRPD) uses the same list from the City of San Antonio [Japan]
• United Nations Enable FAQ What is the definition of disability? [United Nations]
• Washington State Resources and Guidelines for Writing About People with Disabilities
• World Programme of Action Overview [United Nations]

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Part 1: Accessible Travel - Asperger's Syndrome and Autism
Part 2: Assisted Living, Clothing, and Rehab Equipment Products - Assistive Technology
Part 3: Attention Deficit Disorder - Disability Etiquette
Part 4: Disability Organizations - Emergency Preparedness
Part 5: Employment - Klinefelter Syndrome
Part 6: Language - Medical Links
Part 7: Mental Health - Rett Syndrome
Part 8: Scoliosis - Stroke Treatment and Recovery
Part 9: Tay-Sachs Disease - William's Syndrome

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