Patients and Families

Government-Sponsored Organizations

Administration on Developmental Disabilities (ADD)
Programs sponsored by the US Dept. of Health and Human Services which link state governments, local communities, and the private sector to assist people with developmental disabilities to reach maximum potential through increased independence, productivity, and community integration. They address all elements of the life cycle: prevention; diagnosis; early intervention; therapy; education; training; employment; and community living and leisure opportunities.

Centers for Disease Control
Lead federal agency charged with protecting the health and safety of Americans and providing credible information to enhance health decisions. Web site features up-to-date medical news, health statistics and “Health Topics A to Z,” offering links to a broad range of disease and health topics found on the CDC Web site.

National Information Center for Children and Youth with Disabilities
National information and referral center that provides information on disabilities and disability-related issues for families, educators, and other professionals, with special focus on children and youth (birth to age 22). Offers searchable database and a wide variety of helpful materials, many also available in Spanish.

National Institute of Neurological Disorders and Stroke (NINDS)
Part of the National Institutes of Health, NINDS is the nation's leading supporter of biomedical research on disorders of the brain and nervous system. Web site features extensive searchable database of disorders, plus medical updates and information about clinical trials.

National Organization for Rare Disorders (NORD)
Federation of more than 140 not-for-profit voluntary health organizations serving people with rare disorders and disabilities. NORD is committed to the identification, treatment, and cure of rare disorders (i.e., those affecting fewer than 200,000 people in the U.S.) through programs of education, advocacy, research, and service. Organization maintains the Rare Disease Database with information about more than 1,100 rare diseases. For a cost of $7.50, users can receive a full-text version of a disease report containing information such as symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), plus references from up-to-date medical literature. NORD web site also features news alerts, a used medical equipment exchange and information about 900 orphan drugs through the Orphan Drug Database.

National Rehabilitation Information Center (NARIC)
Funded by the National Institute on Disability and Rehabilitation Research (NIDRR) to serve all who are interested in disability and rehabilitation, including consumers, family members, health professionals, educators, rehabilitation counselors, students, librarians, administrators, and researchers. Offers information and referral, customized database searches, and document delivery, as well as access to its five searchable databases containing more than 60,000 disability-related records.

Office of Rare Diseases Research
Information from the National Institutes of Health on more than 6000 rare diseases, including current research, publications, completed research, ongoing studies, ethical trials, and patient support groups.

Toll-Free Numbers for Health Information
Hundreds of toll-free telephone numbers for health-related organizations across the country from the National Health Information Center.

Last Update
August 25, 2011
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Last Update
August 25, 2011
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