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Resources, part 6

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 If you find a link that is no longer active or has moved, please notify the Webmasters.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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Language

• Concept Coding Framework (CCF): people with impaired communication, including difficulties to read or write, may use symbols as an alternative or complement to character based texts. Referencing to, and exchanging these alternatively coded messages over the Internet is difficult due to the lack of standardised encoding schemes and common practises. This site is intended to motivate, describe and promote the introduction and adoption of a common, open and vendor neutral Concept Coding Framework (CCF) to overcome some of these difficulties.
• English as a Foreign Language (University of Sussex Language Institute)
• English as a Second Language (ESL)
• English Grammar FAQ
• ESL/EFL/TESL/TEFL Links Pages (Many TESL/TEFL/TESOL/ELT Links)
• Esmerel's Collection of ESL (English as a Second Language) Resources
• Foreign Languages for Travelers
• Human Languages page from Aboriginal to Welsh including Klingon
• OISE Language schools around the world intensive language schools
• Langenscheidt's New College English Dictionary
• Makaton, a communication programme using symbols and signs for communication and learning disabilities
• The SYMBERED Project "The aim of the Nordic SYMBERED project - funded by NUH - is to develop a user friendly editing tool that makes use of concept coding to produce web pages with flexible graphical symbol support targeted towards people with AAC needs."
• Widgit, software for special needs, including symbols for literacy
• World-Wide Augmentative and Alternative Communication project This was a pan-european initiative to make the electronic highway more accessible for a wide range of persons with language and/or cognitive impairments. Their results are found on this site.

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Learning and Speaking

• "Bibliography for Performance Systems Technology (PST) and Computer-based Instruction (CBI)" published in the ACM SIGDOC Journal of Computer Documentation (JCD) [JCD is no longer being produced. ACM SIGDOC members are able to get copies of archived journals.]
• California Learning Resource Network
• Learning Disabilities Association of America
• LD Online provides information on learning disabilities for parents, teachers, and professionals.
• National Center for Learning Disabilities (NCLD) provides information about learning disabilities, early literacy and learning resources, support for adolescents and adults with learning disabilities, public policy and advocacy tools.
• NLDLine provides information about nonverbal learning disorders.
• The Educational Testing Service provides guidelines for test creators to consider when writing for people with a learning disability, psychiatric disability or attention-deficit/hyperactivity disorder.
• Learning and Speaking Disability Solutions
• MENCAP "Understanding learning disability" Mencap can help you make your information easy to understand for people with a learning disability. Or, if you have a learning disability, you might like to see their easy to read web pages and publications. [UK]
• Natural Language Interfaces Group
• Speech Therapy Links
• Special Education Resources
• Virginia Adult Learning Resource Center

See also Education.

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Legal & Human Rights Resources

• ABA Commission on Disabilities
• ACLU position / briefing paper: Disability Rights, January 1, 1999
• ADA&IT Technical Assistance Centers
• ADA Accessibility Guidelines for Buildings and Facilities (ADAAG)
• ADA Guide for Places of Lodging: Serving Guests Who Are Blind Or Who Have Low Vision
• ADA Hot Links and Document Center
• Adapt grassroots disability rights organization
• Administration on Developmental Disabilities (ADD) U.S. Department of Health and Human Services
• Americans with Disabilities Act (ADA)
• Americans With Disabilities Act Information on the Web
  http://www.usdoj.gov/crt/ada/
• Bazelon Center for Mental Health Law
• UC Berkeley's website on the Disability Rights and Independent Living Movement
• Center for Social Change (CSC) provides residential and supported employment services to children and adults with developmental disabilities in the community [Maryland]
• "Consumers Guide to Disability Rights Laws," U.S. Department of Justice, Civil Rights Division, Disability Rights Section
• Disability Law and Advocacy Resources
• Equal Rights Center, Washington, DC
• EUmap.org from the Open Society Institute (OSI) EU Monitoring and Advocacy Program (EUMAP). This provides resources, news, and analyses on human rights and the rule of law in Europe
• Human Rights Education Associates (HREA)
• Human Rights Issues Related to Women With Disabilities from the Feminist International Radio Endeavour Disabled Women's Section. A Space for Women with All Types of Disabilities
• Justice for All
• Legal Assistance Resource lawyer directory and law-related resources
• Legislation and Legal Issues resource list
• Maryland Department of Disabilities (MDOD) MDOD oversees the restructuring, reorganization of government delivery of services & programs for people with disabilities in Maryland through collaboration with all state government agencies.
• Maryland Developmental Disabilities Administration (DDA) assures the full participation of individuals with developmental disabilities and their families in all aspects of community life
• Maryland Department of Human Resources (DHR) assists people in economic need, provides prevention services, and protects vulnerable children and adults
• Maryland Disability Law Center a private, non-profit organization staffed by attorneys and paralegals
• Maryland Technology Assistance Program (MD TAP)
• Mental Disability Rights International (MDRI)
• National Association of Protection & Advocacy Systems (NAPAS)
• National Disability Rights Network (NDRN), the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP) for individuals with disabilities.
• Neighborhood Legal Services, Inc. (NLS)
• Social Security Disability Information from the Social Security Administration
• Social Security Disability Advocates of America
• Social Security FAQ
• State Laws an overview of State accessibility laws, policies, standards and other resources available online
• U.S. Department of Housing and Urban Development (HUD) Disabilities Resources
• U.S. Department of Justice ADA Home Page
• Workforce Investment Act of 1998
• See additional legal links in International Disability

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Literacy: Reading and Print Disabilities

• America's Literacy Directory (ALD) is a national database of literacy programs available via the Internet and the National Institute for Literacy's toll-free number. The ALD is a service of the National Institute for Literacy (NIFL)
• "Disability, Accessibility and Electronic Literacy" Special Topic in Currents in Electronic Literacy, Spring 2001 (No. 4)
• Daisy Consortium The DAISY standard is now an official NISO standard and is also recognized by the Library of Congress and the W3C. "The DAISY Consortium's mission is to develop the International Standard and implementation strategies for the production, exchange, and use of Digital Talking Books in both developed and developing countries, with special attention to integration with mainstream technology, to ensure access to information for people with print disabilities."
• English Works! Reading Exercises Washington, DC: Gallaudet University
• Focus on Struggling Readers and Writers: IRA Programs and Resources
• International Reading Association Disabled Reader SIG
• Literacy Software to Aid Struggling Students from Freedom Scientific, makers of WYNN and TestTalker
• Literacy Volunteers of the National Capital Area
• Maryland Adult Literacy Resource Center at the University of Maryland Baltimore Campus
• National Institute for Literacy (NIFL)
• Starfall for pre-kindergarten through second grade
• "The Reading Connection: Literacy Development and Homeless Children," by Eileen Hanning, Assistant Program Director for The Reading Connection, Arlington, VA (PDF)
• The Reading Connection (TRC)
• U.S. Department of Education: On the Road to Reading a guide for community partners
• Virginia's Literacy Support Centers " Our goal: To eradicate illiteracy in Virginia. Our challenge: A lack of resources."

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Literature

• Bibliography—literature in relation to Design for All (299 K ) edited by Greta Olsson & Thomas Lyhne. This Bibliography is a part of CEN/CENELEC Guide 6 "Guidelines for standards developers to address the needs of older persons and persons with disabilities". The Guide addresses relevant aspects relating to the needs of older persons and persons with disabilities to be considered when drafting standards. Both documents are part of the Mandate 283 on the safety and usability of products by persons with special needs given by the Commission of the European Communities.
• Disability graphics
• Disability & Health Publications collection of publications about removing barriers from health, meeting, and recreation facilities from the North Carolina Office on Disability and Health (NCODH)
• New Harbinger Publications specializes in psychology and self-help books for medical conditions
• Health Sciences and Human Services Library e-Resources the largest medical library on the East coast. In addition to serving all the professional schools on campus and the University of Maryland Medical Center, the library is a nationally recognized leader in information technology and serves as the Regional Medical Library for the Southeastern United States, Region 2 of the National Network of Libraries of Medicine.
• Health Education Articles
• H-Disability Discussion Network from H-Net: Humanities & Social Sciences Online
• Literature relating to women and technology:
  • Women With Disabilities: Essays in Psychology, Culture, and Politics. Introduction: Beyond Pedestals. Ed: Michelle Fine and Adrienne Asch. Temple University Press. Philadelphia. 1988. ISBN 0-87722-474-9.
  • "On the Margin of the Myth: Exploring the Landscape of Disabled Women's Lives." May 1997 Mainstream Magazine.
  • "Employment, Equality and Gender" by Rannveig Traustadottir from the Center on Human Policy, Syracuse University, September 1990
  • Saxton, Marsha, and Florence Howe, editors. "With wings: An anthology of literature by and about women with disabilities". NY: Feminist Press, 1987.
  • Schultz, Kara. "Every Implanted Child a Star (and Some Other Failures): Guilt and Shame in the Cochlear Implant Debates." Quarterly Journal of Speech 86.3(2000): 251-75.
• Mental Health Libraries and Libraries with Mental Health/Substance Abuse Collections
• National Electronic Library for Mental Health of the Department of Psychiatry, University of Oxford, Warneford Hospital, Oxford [United Kingdom]
• Special Needs Library in Bethesda, Maryland
• Taxicab Driver Customer Service Pocket Guide developed in part by TLPA provides important tips and guidelines for drivers when communicating with and providing transportation service to passengers with disabilities
• Thompson Leave & Disability Coordination Handbook

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Lung Diseases

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

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Lupus

• Lupus Foundation of America, Inc.
• Lupus Multiplex Registry and Repository (LMRR) a research study project sponsored by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS, a branch of the National Institutes of Health or NIH)

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Magazines and Periodicals

• Ability Magazine
• Access World from the American Foundation for the Blind
• Acupuncture in Medicine
• ADDitude is a resource for people with ADD or AD/HD or people who have children with ADD or AD/HD
• American Foundation for the Blind (AFB) eNews
• Arthritis Today Magazine
• Archive of Vision and other Health Articles from USA Today Health
• Blind Skills Dialogue Magazine. A World of Ideas for Visually Impaired People of All Ages.
• Braille Forum is the monthly magazine of the American Council of the Blind
• Careers & the DisABLED magazine
• Cerebral Palsy Magazine
• Currents in Electronic Literacy an electronic journal for the scholarly discussion of issues pertaining to electronic literacy such as the use of electronic texts and technologies in reading, writing, teaching, and learning in fields including but not restricted to: literature (in English and in other languages), rhetoric and composition, languages (English, foreign, or ESL), communications, media studies, and education.
• Current Opinion in Orthopaedics aims to help clinicians and researchers keep up-to-date in a systematic way with the vast amount of information published in orthopaedics.
• Disabled Dealer Magazine
• Disability World Bimonthly e-magazine dedicated to advancing an exchange of information and research about the international independent living movement of people with disabilities.
• Disability Studies Quarterly (DSQ)
• Down Syndrome Quarterly
• e-Access bulletin an e-mail newsletter on information technology issues for people with visual impairment and blindness. Available in English, Italian, Portuguese, and Spanish
• Exceptional Parent Magazine
• Fibromyalgia Network a quarterly journal that collects useful information from physicians, researchers, medical journals, and scientific symposiums to provide ideas for coping and new therapies to try (both drug and nondrug). Every issue focuses on teaching patients how to help their doctors take better care of them.
• GeezerJock: The Masters Sports & Fitness Magazine covers the new and active way of growing old in America. No longer are people settling for shuffleboard. Or mall walking. Or deep knee bends. They are running track, playing baseball – yes, hardball! – and even surfing well into their 60s and beyond. In print and online, GeezerJock celebrates the regenerative power of sports, activity and competition.
• Harris Report quarterly newsletter educates the public about issues affecting the disabled in the Washington, DC metropolitan area
• Inclusion Daily Express their mission is to provide disability advocates with the most up-to-date news, information and commentary about community inclusion, self-determination and disability rights, in a way that saves time and is easy to use.
• Irked Magazine Irked Magazine is committed to the basic idea that people improve when they know someone is paying attention. We think that in each of us lies an artist, and that in each of us lies a story that is dying to be told. Trust us...we're interested in your story.
• Journal of Bone and Joint Surgery (JB&JS), American volume
• Journal of Clinical Sleep Medicine from the American Academy of Sleep Medicine (AASM)
• Journal of Sleep Research
• Journal Sleep
• Journal of Visual Impairment & Blindness (JVIB) from the American Foundation for the Blind
• Lupus Now
• National Center on Secondary Education and Transition (NCSET) E-News
• PN/Paraplegia News magazine for wheelchair users
• Ragged Edge Online The Ragged Edge examines current and emerging public issues from a disability perspective: civil rights, politics, culture, humor, sexuality, art, technology. We publish freelance journalism, essays, poetry and fiction.
• Review of Disability Studies (RDS)
• SETH Open World for Disability and Mature Travel, published four times a year by the Society for the Advancement of Travel for the Handicapped (SATH). A subscription costs $13.00 per year. The address is: SATH Publications, Inc./Open World, 347 Fifth Avenue, Suite 610, New York, NY 10016, 212-447-7284
• Sleep and Biological Rhythms English language journal of the Japanese Society of Sleep Research
• SpeciaLiving Magazine
• Speech Technology Magazine
• Sports 'n Spokes
• Keep up with electronic and information technology (E&IT) accessibility requirements and tools with TecAccess' IT Accessibility Review newsletter.
• Today in PT
• WAI Magazine Short summaries about accessibility tools for Web developers.
• World of Possibilities Magazine from Caring Communities "Live Life Without Limitations" serves local disability communities in the Washington, DC metropolitan area (District of Columbia, Maryland, and Virginia)
• Your Health Magazine

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Medical Links

• Achoo Internet Healthcare Directory
• American Academy of Orthopaedic Surgeons (AAOS)
• Association of American Medical Colleges (AAMC) is a nonprofit association founded in 1876 to work for reform in medical education. Originally representing only medical schools, the Association now includes 125 accredited U.S. medical schools, 16 accredited Canadian medical schools, 400 major teaching hospitals and health systems, 90 academic and professional societies representing nearly 100,000 faculty members, and the nation's medical students and residents.
• American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM)
• American Chiropractic Association
• American College of Rheumatology (ACR)
• American Dental Association (ADA)
• American Diabetes Association (ADA)
• American Dietetic Association (ADA)
• American Hospital Association (AHA)
• American Journal of Orthopedics
• American Medical Association (AMA) publications
• American Nurses Association Nursing World
• American Orthopaedic Society for Sports Medicine
• Amerigroup provides healthcare access and quality for low-income Americans by developing innovative managed health services for the public sector
• Arthritis Foundation
  • Mediflow, the waterbase pillow Canadian manufacturer
• Biological and medical journals and conferences
• ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details.
• Dentistry for the Disabled Child and Adult
• Department of Veterans Affairs is a worldwide resource that provides information on VA programs, veterans benefits, VA facilities worldwide, and VA medical automation software.
• Diabetes Monitor
• Drugstore.com
• Elsevier a multiple-media publisher of scientific, technical and health information products and services
• FDA Consumerofficial magazine of the FDA
• FDA Safety Alerts and Recalls for drugs, biologics, medical devices, and dietary supplements
• Foot and Ankle Institute
• Foot Problems
  
• Games for Health a project that applies cutting edge games and game technologies to a range of public and private policy, leadership, and management issues to develop a community and best practices platform for the numerous games being built for health care applications.
• Geronurse online is the official geriatric nursing Web site of the American Nurses Association (ANA)
• Hospital locator
• How to Donate Unused Medicines
• Johns Hopkins Medical Institutions (JHMI)
• Lippincott Williams & Wilkins offers specialized publications and software for physicians, nurses, students, and specialized clinicians
• Medical Certificate form (37 K )
• Medicare
• Medicine.net provides reliable doctor-produced health and medical information. MedicineNet® is a network of U.S. Board Certified Physicians and Allied Health Professionals.
• MedWatch the FDA Medical Products Reporting form (41 K )
• MedWatch Program
• Medical databases
• Medscape patient information newsletters
• National Center for Complementary and Alternative Medicine (NCCAM) a part of the National Institutes of Health (NIH)
• National Foundation of Dentistry for the Handicapped (NFDH)
• National Health Observances days, weeks, or months devoted to promoting particular health concerns.
• National Institutes of Health (NIH), U.S. Department of Health and Human Services
• National Library of Medicine (NLM)
• National Sports Medicine Institute of the United Kingdom [dead link]
• New England Journal of Medicine
• Nursing Home Comparisons
• Pharmaceutical Information Network DrugFAQs, medical meeting summaries, medical discussion groups
• Physiological Imaging, Department of Radiology, University of Iowa
• Physiological Imaging Research, Mayo Clinic College of Medicine
• PlanetAmber global health and disability resource center
• Reiter's Scientific and Professional Books
• RxList drug information
• Scirus a comprehensive science-specific search engine
• ScienceDirect the world's largest full text database of scientific articles
• Sports Medicine
• U.S. Food and Drug Administration (FDA)
• U.S. Food and Drug Administration Center for Food Safety & Applied Nutrition also cosmetics and women's health
• Virtual Hospital
• Visible Human Project A human being, sliced up into tiny little slide-show size pieces...
  
• Volunteers for Medical Engineering
• What is a Doctor of Osteopathic Medicine (D.O.) from the American Osteopathic Association (AOA)
• WebMD

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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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