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NLS Reference Circulars

Physical Disabilities: Information and Advocacy Organizations

Web version revised September 19, 2012
Original document posted 2003


The national organizations listed in this reference circular serve as information clearinghouses, referral agencies, and legislative advocates for people with physical disabilities, their families, and the professionals who work with them. Many provide services such as peer support and counseling directly to the individual. They distribute publications related to their missions and may also support research to find a cure for or to control the specific disorder for which they advocate.


General Organizations

American Association of People with Disabilities

1629 K Street NW, Suite 503
Washington, DC 20006
(202) 457-0046 voice and TTY
800-840-8844 voice and TTY


Principal publication: AAPDnews, quarterly

Works in coalition with other disability organizations to implement and enforce disability nondiscrimination laws. Educates the public and government policymakers regarding issues affecting people with disabilities.

ARCH (Access to Respite Care and Help) National Respite Network

800 Eastowne Drive, Suite 105

Chapel Hill, NC 27514

800-473-1727, ext. 222

(919) 490-4905 fax



Principal publication: Network News, quarterly, in print and online

Maintains the ARCH National Resource Center, which includes a respite locator service, publications, and a lending library. Advocates for promoting respite in policy and programs through the National Respite Coalition.

Association of Specialized and Cooperative Library Agencies (ASCLA)

American Library Association

50 East Huron Street

Chicago, IL 60611


(312) 944-8085 fax



Principal publication: Interface, quarterly

Seeks to enhance the development and effectiveness of library service for persons with physical, visual, health, or behavioral problems through professional and service constituencies, including state library agencies, specialized library agencies, multitype library organizations, and independent librarians.

Association on Higher Education and Disability (AHEAD)

P.O. Box 540666

Waltham, MA 02454

(781) 788-0003 voice and TTY

(781) 788-0033 fax



Principal publication: Journal of Postsecondary Education and Disability, seminannual

Seeks to upgrade services and support for persons with disabilities in higher education through training programs, workshops, and conferences. Sells publications and videos.

Breaking New Ground Resource Center and Outreach Program

1146 ABE Building

West Lafayette, IN 47906

(765) 494-5088




Principal publication: Breaking New Ground News Note, 3 issues/year, in print and online

Serves as a source of assistance and information on rehabilitation and assistive technology for persons with disabilities who work in agriculture.

Center for Research on Women with Disabilities (CROWD)

3440 Richmond Avenue, Suite B

Houston, TX 77046

(713) 960-0505

800-442-7693 (800-44-CROWD)

(713) 961-3555 fax



Conducts research on issues related to the health, independence, and community integration of women with physical disabilities. Maintains a database on psychosocial behaviors of women with physical disabilities compared to women without disabilities.

Center for Universal Design

College of Design

North Carolina State University

50 Pullen Road, Brooks Hall, Room 104

Campus Box 8613

Raleigh, NC 27695-8613

(919) 515-3082


(919) 515-7330 fax



Serves as a national research, information, and technical assistance center that evaluates, develops, and promotes universal design in housing and public and commercial facilities. Produces publications, slide shows, videos, and journal articles about accessibility and universal design.

Consortium for Citizens with Disabilities

1331 H Street NW, Suite 301

Washington, DC 20005

(202) 783-2229

(202) 783-8250 fax


Serves as a coalition of national disability organizations that advocates for public policy to ensure the self determination, empowerment, integration, and inclusion of children and adults with physical and mental disabilities in all aspects of society.

Disability Rights Education and Defense Fund, Inc. (DREDF)

2212 Sixth Street

Berkeley, CA 94710

(510) 644-2555 voice and TTY

(510) 841-8645 fax



Government Affairs Office

1629 K Street NW, Suite 802

Washington, DC 20006

(202) 986-0375

(202) 775-7465 fax

Principal publication: DREDF News, periodic, in print and online

Acts as a national law and policy center dedicated to protecting and advancing the civil rights of people with disabilities through legislation, litigation, advocacy, and technical assistance. Educates and trains attorneys, advocates, persons with disabilities, and parents of children with disabilities.

Disability Statistics Center

3333 California Street, Suite 340
Campus Mail Box 0646
San Francisco, CA 94118
(415) 502-5210
(415) 502-5205 TTY
(415) 502-5208 fax



Compiles and disseminates statistical information on the status of people with disabilities in the United States and monitors indicators of how their conditions are changing. Produces Disability Statistics Reports, Disability Statistics Abstracts, and other publications.

Disabled American Veterans

3725 Alexandria Pike

Cold Spring, KY 41076

(859) 441-7300


National Service and Legislative Headquarters

807 Maine Avenue SW

Washington, DC 20024

(202) 554-3501

Principal publication: DAV Magazine, bimonthly

Operates a national network of programs through which volunteers provide a variety of free services to veterans with disabilities. Represents veterans and their families with claims for benefits from the Veterans Administration, Social Security Administration, and other government agencies. Promotes legislation to assist veterans, their families, widowed spouses, and orphans.

Easter Seals

230 West Monroe Street, Suite 1800

Chicago, IL 60606

(312) 726-6200


(312) 726-4258 TTY

(312) 726-1494 fax


Principal publication: Newsletter, monthly, via e-mail

Assists children and adults with disabilities and their families through a nationwide network of service sites. Provides family focused services that are tailored to meet the specific needs of the community it serves. Services may include child care, medical rehabilitation, job training and employment, adult day care, and camping.

Eastern Paralyzed Veterans Association (EPVA)

75-20 Astoria Boulevard

Jackson Heights, NY 11370

(718) 803-3782 (718-803-EPVA)

(718) 803-0414 fax



Principal publications: Action Newsletter, monthly, in print and online; MSQR: Multiple Sclerosis Quarterly Report, quarterly

Enhances the lives of veterans with spinal cord injuries or diseases by ensuring quality health care, promoting research, and advocating for civil rights and independence. Serves 2,300 members, most of whom reside in New York, New Jersey, Connecticut, Pennsylvania, and Maine.

Family Caregiver Alliance

690 Market Street, Suite 600
San Francisco, CA 94104
(415) 434-3388
www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=545 (in Spanish)
www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=529 (in Chinese)

Principal publications: Update and Al Dia (in Spanish), quarterly, in print and online; Caregiving PolicyDigest, biweekly, online only

Provides information for caregivers to assist in care, planning, stress relief, and locating and using community resources.

HEATH Resource Center

The George Washington University

2121 K Street NW, Suite 220

Washington, DC 20037

(202) 973-0904 voice and TTY


(202) 973-0908 fax



Principal publication: Infomation from HEATH, quarterly, in print and online

Serves as a national clearinghouse on postsecondary education for individuals with disabilities. Publishes resource papers, factsheets, and a biennial directory that is an annotated listing of organizations that can be contacted for information such as advocacy and community integration.

Independent Living Research Utilization (ILRU) Program

2323 South Shepherd, Suite 1000

Houston, TX 77019

(713) 520-0232

(713) 520-5136 TTY

(713) 520-5785 fax



Operates as a program of the Institute for Rehabilitation and Research. Serves as a national center for information, training, research, and technical assistance in independent living. Seeks to improve utilization of results of research programs and demonstration projects in this field. Has online publications.

Learning Ally [formerly: Recording for the Blind and Dyslexic]

20 Roszel Road

Princeton, NJ 08540

(609) 520-8096




Lends recorded books, ranging in educational levels from late-elementary school through post-graduate, to persons with a verified visual, physical, or learning disability that substantially limits reading. Requires a one-time registration fee and annual membership fee.

MOVE International (Mobility Opportunities Via Education)®

1300 17th Street

City Centre

Bakersfield, CA 93301-4533

800-397-6683 (800-397-MOVE)

(661) 636-4045 fax



Principal publication: MOVE International Newsletter, semiannual, in print and online

Helps children and adults with severe disabilities to sit, stand, and walk through instruction and adaptive equipment that enhances independent mobility.

National Alliance for Caregiving

4720 Montgomery Lane, 5th Floor

Bethesda, MD 20814

(301) 718-8444

(301) 652-7711 fax



Provides support to family caregivers and the professionals who help them and increases public awareness of caregiving issues. Has an online Family Care Resource Connection, which is a searchable database of reviews and of ratings of print and nonprint materials on caregiving.

National Association of Protection and Advocacy Systems, Inc.

900 Second Street NE, Suite 211

Washington, DC 20002

(202) 408-9514

(202) 408-9520 fax



Promotes and strengthens the role and performance of its member agencies of protection and advocacy systems and client assistance programs in providing advocacy services and technical assistance.

National Council on Independent Living

1916 Wilson Boulevard, Suite 209

Arlington, VA 22201

(703) 525-3406

(703) 525-4153 TTY

(703) 525-3409 fax



Principal publication: The Advocate, monthly

Advances the independent-living philosophy and advocates for the rights of and services for people with disabilities to further their integration and participation in society. Provides information and referral services.

National Council on Patient Information and Education

4915 Saint Elmo Avenue, Suite 505

Bethesda, MD 20814-6082

(301) 656-8565

(301) 656-4464 fax



Develops programs and provides educational resources in English and Spanish to improve communication of information on the appropriate use of medicines to consumers and health care professionals.

National Family Caregivers Association

10400 Connecticut Avenue, #500

Kensington, MD 20895-3944


(301) 942 2302 fax



Principal publication: Take Care!, quarterly

Provides access to professional caregiver advisory services, a prescription drug discount program, and a bereavement kit. Sells publications.

National Organization on Disability

910 Sixteenth Street NW, Suite 600

Washington, DC 20006

(202) 293-5960

(202) 293-5968 TTY

(202) 293-7999 fax



Principal publication: E-newsletter, biweekly, via e-mail

Promotes the full and equal participation of individuals with disabilities in all aspects of life through community programs, employment resources, and information on accessible housing, health care, and transportation.

National Rehabilitation Association

633 South Washington Street

Alexandria, VA 22314

(703) 836-0850

(703) 836-0849 TTY

(703) 836-0848 fax



Principal publications: Contemporary Rehab, bimonthly; Journal of Rehabilitation, quarterly

Advocates for programs and services for people with disabilities and for career advancement for professionals in rehabilitation fields such as counselors and physical, speech, and occupational therapists.

National Rehabilitation Information Center (NARIC)

4200 Forbes Boulevard, Suite 202

Lanham, MD 20706

(301) 459-5900




Principal publication: RehabWire, monthly

Offers searchable online databases, information specialists to answer requests for information or documents, and REHABDATA-Connection to sign up for a monthly literature-awareness service by electronic mail.

NISH (formerly the National Industries for the Severely Handicapped)

8401 Old Courthouse Road

Vienna, VA 22182

(571) 226-4660

(703) 849-8916 fax



Principal publication: Workplace, monthly, in print and online

Develops and maintains employment and training opportunities for people with severe disabilities through the Javits-Wagner-O'Day (JWOD) program.

Paralyzed Veterans of America (PVA)

801 Eighteenth Street NW

Washington, DC 20006-3517


800-232-1782 PVA Health Care Hotline



Principal publications: PN/Paraplegia News, monthly; Sports n' Spokes, 8 issues/year

Serves veterans of the armed forces who have experienced spinal-cord injury or dysfunction. Advocates for benefits and quality health care for its members, for research and education on spinal-cord injury and dysfunction, and for civil rights and opportunities that maximize the independence of its members.

Rehabilitation Engineering and Assistive Technology Society of North America (RESNA)

1700 North Moore Street, Suite 1540

Arlington, VA 22209-1903

(703) 524-6686

(703) 524-6639 TTY

(703) 524-6630 fax



Principal publication: Assistive Technology, semiannual

Promotes research, development, education, and advocacy in the use of technology to improve the potential of people with disabilities to achieve their goals. Has an online Job Bank that lists assistive technology employment opportunities in the United States. Sells publications.

Rehabilitation International

25 East 21st Street

New York, NY 10010

(212) 420-1500

(212) 505-0871 fax



Principal publications: International Rehabilitation Review, biannual, in print and online; One in Ten, 3 issues/year, in print and online

Is composed of national and international organizations and agencies in eighty countries. Develops and promotes initiatives to protect the rights of and improve rehabilitation and other services for people with disabilities. Increases international collaboration towards these objectives.

Research and Training Center on Independent Living (RTC/IL)

University of Kansas

Room 4089 Dole Center

1000 Sunnyside Avenue

Lawrence, KS 66045-7555

(785) 864-4095

(785) 864-0706 TTY

(785) 864-5063 fax



Works on research and training projects that enhance independent living for people with disabilities. Produces and sells materials.


29 West Susquehanna Avenue, Suite 210

Baltimore, MD 21204

(410) 828-8274

(410) 828-6706 fax


Principal publications: Research and Practice for Persons with Severe Disabilities (formerly JASH), quarterly, scientific publication; TASH Connections, 10 issues/year

Promotes the full inclusion and participation of persons with disabilities in all aspects of life and supports legislation and public policy to achieve this goal.

The University of Montana Rural Institute

Center for Excellence in Disability Education, Research, and Service

52 Corbin Hall

Missoula, MT 59812

(406) 243-5467 voice and TTY

800-732-0323 voice and TTY

(406) 243-4730 fax



Advocates and supports full participation in community life by individuals with disabilities in rural America. Provides service demonstration programs, research, technical assistance and training, and information dissemination.

World Institute on Disability

510 16th Street, Suite 100

Oakland, CA 94612

(510) 763-4100

(510) 208-9496 TTY

(510) 763-4109 fax


www.wid.org/ and www.proyectovision.net/ (in Spanish)

Principal publications: Impact!, semiannual, in print and online; Disability World, bimonthly, via e-mail

Serves as a nonprofit research, public policy, and advocacy center dedicated to promoting independence and societal inclusion of people with disabilities.

Organizations on Specific Diseases and Injuries

American Amputee Foundation, Inc.

P.O. Box 250218, Hillcrest Station

Little Rock, AR 72225

(501) 666-2523

(501) 666-8367 fax

Serves as an information clearinghouse and referral center for amputees and their families.

American Association of Diabetes Educators (AADE)

100 West Monroe Street, Suite 400

Chicago, IL 60603


(312) 424-2427 fax



Principal publications: The Diabetes Educator, bimonthly; AADE FYI, quarterly

Advances the practice of diabetes self-management training as a component of health care for persons with diabetes and lifestyle management for the prevention of diabetes. Offers online lists of products and services and diabetes educators in the United States and its territories and Canada. Awards grants to members to support research and program development in diabetes.

American Association of Kidney Patients (AAKP)

3505 East Frontage Road, Suite 315

Tampa, FL 33607


(813) 636-8122 fax



Principal publications: AAKP Kidney Beginnings: The Electronic Newsletter, monthly, via e-mail; AAKP Kidney Beginnings: The Magazine, quarterly; AAKP Renal Flash, monthly, online only; aakpRenalife, bimonthly

Helps dialysis and transplant patients and their families deal with the physical, emotional, and social impact of kidney disease.

American Diabetes Association

National Call Center

1701 North Beauregard Street

Alexandria, VA 22311

800-DIABETES (800-342-2383)


www.diabetes.org/homepage.jsp and

www.diabetes.org/community/outreach/latinos/enespanol.jsp (in Spanish)

Principal publications: Diabetes Forecast, monthly; E-newsletters (several available), frequency varies, via e-mail

Provides information and community-based services to people with diabetes, their families, health-care professionals, and the public. Advocates for the rights of people with diabetes, funds research, and publishes scientific findings.

American Epilepsy Society (AES)

342 North Main Street

West Hartford, CT 06117-2507

(860) 586-7505

(860) 586-7550 fax



Principal publications: AES News, 3 issues/year, in print and online; Epilepsia, monthly; Epilepsy Currents, bimonthly, in print and online

Promotes scientific investigation, exchange of clinical information, and education about epilepsy among professionals interested in seizure disorders.

American Heart Association (AHA)

American Stroke Association (ASA)

7272 Greenville Avenue

Dallas, TX 75231

AHA: 800-242-8721 (800-AHA-USA-1)

ASA: 888-478-7653 (888-4-STROKE)


Principal publication: Advocacy Pulse, bimonthly, online; Stroke Connection Magazine, bimonthly, in print and online

Has educational materials in English and Spanish on heart and stroke topics and links to sites with information on specific conditions and lifestyle improvements. Publishes scientific reports, guidelines, and journal articles that can be searched and retrieved online.

American Kidney Fund

6110 Executive Boulevard, Suite 1010

Rockville, MD 20852

800-638-8299 help line



Provides direct financial assistance to needy kidney patients, sponsors educational programs and the Minority Health Outreach Program, and maintains a help line.

American Paralysis Association

See: Christopher Reeve Paralysis Foundation

American Paraplegia Society

75-20 Astoria Boulevard

Jackson Heights, NY 11370

(718) 803-3782

(718) 803-0414 fax



Principal publication: Journal of Spinal Cord Medicine, 3 issues/year

Fosters the interchange of ideas among physicians and other health care professionals on spinal cord injury and allocates grants for clinical research.

American Parkinson Disease Association, Inc.


National Office

1250 Hylan Boulevard, Suite 4B

Staten Island, NY 10305


(718) 981-4399 fax


West Coast Office

10850 Wilshire Boulevard., Suite 730

Los Angeles, CA 90024-4319

(310) 474-5391


(310) 474-0292 fax


Principal publication: APDA Newsletter, quarterly

Responds to the needs of persons with Parkinson's disease and their caregivers through education, referral, support, and public awareness programs. Has publications in English, Italian, and other foreign languages.

American Spinal Injury Association

2020 Peachtree Road NW

Atlanta, GA 30309-1402

(404) 355-9772

(404) 355-1826 fax


Has a membership composed of physicians and allied health professionals involved in spinal cord injury management and research. Provides education on all aspects of spinal cord injury and its consequences in order to prevent injury, improve care, and increase availability of services. Offers A National Directory of Spinal Cord Injury Prevention Programs at <www.asia- spinalinjury.org/faq/prd/resources.html>.

Amputee Coalition of America

900 East Hill Avenue, Suite 285

Knoxville, TN 37915-2568

(865) 524-8772

888-267-5669 (888-AMP-KNOW)

(865) 525-7917 fax



Principal publications: The Communicator, bimonthly, for amputee support group leaders; inMotion, bimonthly, for amputees and those who care for and about them; Youth inMotion, 3 issues/year, for amputee youth ages 6 to 18

Serves people who have experienced amputation or are born with limb differences and family members and friends of amputees. Maintains the National Limb Loss Information Center, which can be accessed online or by the national hotline. Offers amputee education and support groups with peer training, training manuals, educational materials, and possible funding sources.

Amputee Resource Foundation of America, Inc.

2324 Wildwood Trail, Suite F104

Minnetonka, MN 55305

(612) 812-7875



Disseminates information, performs charitable services, and conducts research to enhance productivity and quality of life for amputees in America. Maintains the Amputee Information Resource Center.

Amyotrophic Lateral Sclerosis (ALS) Association

27001 Agoura Road, Suite 150

Calabasas Hills, CA 91301

(818) 880-9007




Principal publication: Link, quarterly

Seeks to find a cure for and improve living with amyotrophic lateral sclerosis. Has publications, including six Living with ALS manuals, some of which are available for downloading. Has links to a physician list, products and services for daily living, and organizations dealing with ALS, caregiving, and research.

Arthritis Foundation

P.O. Box 7669

Atlanta, GA 30357-0669


www.arthritis.org/ and www.arthritis.org/espanol/ (in Spanish)

Principal publication: Arthritis Today, bimonthly

Offers programs and services through local offices to children and adults with various types of arthritis and related conditions and advocates on their behalf. Produces free brochures and funds research.

Brain Injury Association of America

8201 Greensboro Drive, Suite 611

McLean, VA 22102

(703) 761-0750

800-444-6443 family help line

(703) 761-0755 fax


www.biausa.org/ and www.biausa.org/Pages/espanol_home.html (in Spanish)

Principal publication: TBI Challenge!, quarterly

Acts as a clearinghouse for information and resources for persons with brain injury and their families and professionals. Engages in advocacy and prevention awareness, hosts educational programs, and encourages research.

Brain Injury Resource Center

Head Injury Hotline

212 Pioneer Building

Seattle, WA 98104-2221

(206) 621-8558



Offers consultations, research assistance, case management services, legal services, and in-service training to individuals with brain injuries and their families and professionals in such fields as healthcare, law, and education.

CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) Association of America

P.O. Box 220398

Charlotte, NC 28222-3098

(704) 365-2343



Principal publications: CFIDS Chronicle, quarterly, in print and online; CFS Research Review, semiannual, in print and online

Engages in education, public policy advocacy, and research on chronic fatigue and immune dysfunction syndrome. Has free publications.

The Charles Ray III Diabetes Association

P. O. Box 792

Apex, NC 27502
(919) 303-6949 phone/fax



Provides medical devices and supplies to individuals with diabetes throughout the world who are unable to afford the cost. Holds one major fundraiser a year, The Charles Ray III Golf Classic, and accepts donations from the public.

Christopher Reeve Paralysis Foundation

500 Morris Avenue

Springfield, NJ 07081


800-539-7309 Paralysis Resource Center



Principal publication: Bridging the Gap, bimonthly, via e-mail

Works to improve the quality of life for people living with paralysis through its grants program, Paralysis Resource Center, and advocacy efforts.

Cystic Fibrosis Foundation

6931 Arlington Road

Bethesda, MD 20814

(301) 951-4422

800-344-4823 (800-FIGHT CF)

(301) 951-6378 fax



Principal publication: Commitment, 2-3 issues/year

Supports medical research and legislative action to achieve its mission of

finding a cure or control for cystic fibrosis and to improve the quality of life for people with the disease. Serves as an information resource.

Epilepsy Foundation

4351 Garden City Drive

Landover, MD 20785-7223


www.epilepsyfoundation.org/ and www.epilepsyfoundation.org/contestacion/index.cfm (in Spanish)

Principal publications: EpilepsyUSA, bimonthly, in print and online; eNewsletter, monthly, via e-mail

Serves children and adults with seizures through research, education, service, and advocacy. Trains people with epilepsy to be patient educators through the H.O.P.E. (Helping Other People with Epilepsy) Mentoring Program. Maintains the National Epilepsy Library and online eCommunities Interest Groups.

Foundation for Spinal Cord Injury Prevention, Care, and Cure

11230 White Lake Road

Fenton, MI 48430


(810) 714-0354 fax



Dedicated to the prevention, care, and cure of spinal cord injuries through public awareness, education, and funding research.

Huntington's Disease Society of America (HDSA)

158 West 29th Street, 7th Floor

New York, NY 10001-5300

800-345-4372 (800-345-HDSA)

(212) 239-3430 fax



Principal publication: The Marker, semiannual, in print and online

Helps individuals with Huntington's disease and their families. Educates the public and health care professionals about the disease. Makes grant awards available to principal investigators to find a cure for the disease.

Lupus Foundation of America, Inc.

2000 L Street NW, Suite 710

Washington, DC 20036

(202) 349-1155

800-558-0121 information request line

800-558-0231 in Spanish

(202) 349-1156 fax


www.lupus.org/ and www.lupus.org/support/spanish.html (in Spanish)

Principal publication: Lupus Now, 3 issues/year

Educates and supports individuals who have lupus, their families, physicians, and the public. Sells books, cassettes, and videotapes and has online articles and brochures. Seeks to find a cure.

Multiple Sclerosis Association of America

706 Haddonfield Road

Cherry Hill, NJ 08002

800-532-7667, ext. 100

(856) 661-9797 fax



Principal publication: The Motivator, quarterly

Provides support groups and direct services to individuals with multiple sclerosis and their families. Offers free publications, a help line, and a lending library. Lends mobility and safety equipment.

Multiple Sclerosis Foundation

6350 North Andrews Avenue

Fort Lauderdale, FL 33309-2130

(954) 776-6805


(954) 351-0630 fax


www.msfacts.org/ and www.msfacts.org/esp_index.html (in Spanish)

Principal publications: MSFocus, quarterly, in print; MSFYi, monthly, via e-mail; Support Group News, bimonthly, in print and via e-mail

Has print publications and an online Support Group Directory. Offers grants to individuals with multiple sclerosis and limited means to obtain goods and services. Supports research into causes and a cure for the disease.

Muscular Dystrophy Association USA

3300 East Sunrise Drive

Tucson, AZ 85718



www.mdausa.org/ and www.mdausa.org/espanol/ (in Spanish)

Principal publications: MDA/ALS Newsletter, monthly, in print and online;

Quest, bimonthly, in print and online

Offers support groups for individuals with neuromuscular diseases and their families and MDA summer camps. Produces publications and sponsors research into the causes of and treatments for neuromuscular diseases.

Myasthenia Gravis Foundation of America

1821 University Avenue West, Suite S256

Saint Paul, MN 55104

(651) 917-6256


(651) 917-1835 fax



Principal publication: Foundation Focus, quarterly, in print and online

Serves individuals with myasthenia gravis and closely related disorders to improve their lives through programs of patient services, public information, medical research, professional education, and advocacy. Maintains a patient registry to document patient histories.

National Amputation Foundation

40 Church Street

Malverne, NY 11565

(516) 887-3600

(516) 887-3667 fax



Principal publication: The Amp, 3-4 issues/year

Offers assistance to veteran and civilian amputees, including peer counseling and donated medical equipment for persons in need.

National Aphasia Association

29 John Street, Suite 1103

New York, NY 10038


(212) 267-2812 fax



Principal publication: National Aphasia Association Newsletter, semiannual, in print and online

Promotes public education, research, rehabilitation, and support services to assist people with aphasia and their families.

National Kidney Foundation

30 East 33rd Street, Suite 1100

New York, NY 10016

(212) 889-2210


(212) 689-9261 fax


www.kidney.org/ and www.kidney.org/general/spanish.cfm (in Spanish)

Principal publication: E-Kidney, monthly, via e-mail

Seeks to improve the health of individuals with kidney and urinary tract diseases and to increase the availability of all organs for transplantation. Researches prevention of these diseases. Offers brochures in PDF format and online message boards.

National Limb Loss Information Center

See: Amputee Coalition of America

National Multiple Sclerosis Society

733 Third Avenue

New York, NY 10017

800-344-4867 (800-Fight MS)

www.nmss.org/ and www.nationalmssociety.org/Informacion%20en%20Espanol.asp (in Spanish)

Principal publications: Inside MS, quarterly, in print and online; Keep S'myelin, quarterly, for ages 5-12, in print and online

Promotes research, education, and advocacy for individuals with multiple sclerosis and their families. Has print and online publications in English and Spanish.

National Organization for Rare Disorders

55 Kenosia Avenue

P.O. Box 1968

Danbury, CT 06813-1968

(203) 744-0100


(203) 797-9590 TTY

(203) 798-2291 fax



Principal publication: Orphan Disease Update, 3 issues/year

Maintains searchable databases and an alphabetical index of rare diseases. Advocates for individuals with these diseases and their families.

National Parkinson Foundation, Inc.

Bob Hope Parkinson Research Center

1501 NW Ninth Avenue, Bob Hope Road

Miami, FL 33136-1494

(305) 547-6666


(305) 243-4403 fax



Principal publication: Parkinson Report, quarterly

Encourages the establishment of support groups and has informational materials for their formation. Offers free publications in English and Spanish and sponsors patient seminars. Seeks to find the cause and cure for Parkinson's disease and related neurodegenerative disorders through research.

National Spinal Cord Injury Association

6701 Democracy Boulevard, Suite 300-9

Bethesda, MD 20817

(301) 214-4006


(301) 881-9817 fax



Principal publications: SCI E-News, monthly, via e-mail; SCI Life, quarterly, in print and online

Provides information and referral services and a national peer support network to link people with spinal cord injury to each other. Supports legislative initiatives regarding issues affecting people with spinal-cord injury.

National Stroke Association

9707 East Easter Lane

Englewood, CO 80112
(303) 649-9299

800-787-6537 (800-STROKES)

(303) 649-1328 fax

www.stroke.org and (in Spanish) and (in French)

Principal publication: Stroke Smart, bimonthly

Provides education, services, and community-based activities in prevention, treatment, rehabilitation, and recovery.

Parkinson's Disease Foundation (PDF)

William Black Medical Building

Columbia-Presbyterian Medical Center

710 West 168th Street

New York, NY 10032-9982

(212) 923-4700


(212) 923-4778 fax



Principal publication: PDF News, quarterly, in print and online

Provides funding to support research and training fellowships, answers questions submitted online at Ask the Expert, and offers publications.

The Parkinson's Institute

1170 Morse Avenue

Sunnyvale, CA 94089-1605

(408) 734-2800


(408) 734-8522 fax


Principal publication: The Institute, semiannual, in print and online

Conducts patient care and research activities in the area of movement disorders. Seeks to find the cause and cure for these disorders, to investigate better treatment and diagnostic tools, and to develop prevention strategies.

Post-Polio Health International (PHI)

4207 Lindell Boulevard, #110

St. Louis, MO 63108-2915

(314) 534-0475

(314) 534-5070 fax



Principal publications: Post-Polio Health, quarterly, in print and online; Ventilator-Assisted Living, quarterly, in print and online

Promotes education and advocacy for individuals who have post-polio syndrome and are home mechanical-ventilator users. Produces the Post-Polio Directory and Resource Directory for Ventilator-Assisted Living, each in print and online, and other publications.

Spina Bifida Association of America

4590 MacArthur Boulevard NW, Suite 250

Washington, DC 20007-4226

(202) 944-3285


(202) 944-3295 fax


www.sbaa.org/ and www.sbaa.org/html/sbaa_espanol.html (in Spanish)

Principal publication: Insights, bimonthly

Seeks to enhance the lives of individuals living with spina bifida and to find a cure for the disease. Sells publications in English and Spanish.

Spinal Cord Society

19051 County Highway 1

Fergus Falls, MN 56537-7609

(218) 739-5252 or (218) 739-5261

(218) 739-5262 fax


Principal publication: SCS Newsletter, monthly

Provides research support to find a cure for paralysis from spinal-cord injury.

Tourette Syndrome (TS) Association, Inc.

42-40 Bell Boulevard

Bayside NY 11361

(718) 224-2999

888-486-8738 (888-4touret)


Principal publications: Children's Newsletter (written by and for children with TS), free to members; Medical Letter, annual, free to professional and allied professional members; Newsletter, quarterly, free to members

Develops and disseminates educational materials to individuals and professionals. Coordinates support services and funds research to find the cause of and cure for the disease.

UCP National (aka United Cerebral Palsy)

1660 L Street NW, Suite 700

Washington, DC 20036

(202) 776-0406


(202) 973-7197 TTY

(202) 776-0414 fax

www.ucp.org/ and www.ucp.org/ucp_general.cfm/1/11788 (in Spanish)

Principal publications: Capitol Insider, weekly, via e-mail; Washington Watch, monthly, via e-mail

Provides information and referral on cerebral palsy and advocates for the rights of people with disabilities. Sponsors research related to the prevention of cerebral palsy. Offers a range of direct services through UCP affiliates.

Organizations Focusing on Children with Special Needs

American Juvenile Arthritis Organization

See: Arthritis Foundation

Birth Defect Research for Children, Inc.

930 Woodcock Road, Suite 225

Orlando FL 32803

(407) 895-0802



Principal publication: Birth Defect News, monthly, via e-mail

Provides parents and expectant parents with information about birth defects and support services for their children. Has a parent-matching program to link families who have children with similar birth defects. Sponsors the National Birth Defect Registry, a research project to study associations between birth defects and exposures to radiation, medication, alcohol, smoking, and toxins.

Council for Exceptional Children (CEC)

1110 North Glebe Road, Suite 300

Arlington, VA 22201-5704

(703) 620-3660

888-232-7733 (888-CEC-SPED)

866-915-5000 TTY

(703) 264-9494 fax



Principal publications: Exceptional children, quarterly; Teaching exceptional children, bimonthly

Seeks to improve educational outcomes for individuals who are disabled or gifted. Advocates for governmental policies, sets professional standards, and provides professional development training. Sells books and videos. Operates the Clearinghouse on Disabilities and Gifted Education, which is part of the nationwide Educational Resources Information Center (ERIC) network.

Family Voices National Office

3411 Candelaria NE, Suite M

Albuquerque,NM 87107

(505) 872-4774


(505) 872-4780 fax


Principal publication: Bright Futures: Family Matters, quarterly, via e-mail; Friday's Child, weekly, via e-mail; Voices, bimonthly

Serves as a grassroots clearinghouse for information and education concerning children and youth with special health care needs.

Juvenile Diabetes Research Foundation International

120 Wall Street

New York, NY 10005-4001

800-533-2873 (800-533-CURE)

(212) 785-9595 fax



Principal publications: Countdown for Kids, quarterly; Countdown Magazine, quarterly; Research E-newsletter, monthly, via e-mail

Advocates and supports research to find a cure for juvenile diabetes and its complications.

March of Dimes

1275 Mamaroneck Avenue

White Plains, NY 10605

888-663-4637 (888-MODIMES) and 800-925-1855 (in Spanish)

(914) 997-4537 fax


www.marchofdimes.com/ and www.nacersano.org/ (in Spanish)

Principal publication: mama Magazine, annual (in English and Spanish); Newsletter, monthly, via e-mail

Maintains the Pregnancy and Newborn Health Education Center to provide confidential answers to questions about preconception, pregnancy health and nutrition, newborn screening, and related topics. Has free materials.

National Dissemination Center for Children with Disabilities (NICHCY)

P.O. Box 1492

Washington, DC 20013

800-695-0285 voice and TTY

(202) 884-8441 fax


www.nichcy.org/ and www.nichcy.org/spanish.htm (in Spanish)

Serves as a national information center on disabilities and disability-related issues, with a special focus on children and youth (birth to age 22). Has print and online publications in English and Spanish.

Federal Agencies

Centers for Disease Control and Prevention

National Center for Chronic Disease Prevention and Health Promotion

4770 Buford Highway NE, Mail Stop K-40

Atlanta, GA 30341-3717

(770) 488-5706



Conducts studies and surveys on the causes of chronic diseases. Supports programs to promote healthy behaviors. Offers publications in print and online and provides state profiles with state-based projects and statistics.

Centers for Disease Control and Prevention

National Center on Birth Defects and Developmental Disabilities

4770 Buford Highway NE, Mail Stop F-35

Atlanta, GA 30341

(770) 488-7150


(770) 488-7075 fax

www.cdc.gov/ncbddd/ and www.cdc.gov/ncbddd/defaultspan.htm (in Spanish)

Works to identify the causes of birth defects and developmental disabilities, to help children develop and reach their full potential, and to promote health and well-being among people of all ages with disabilities.

Job Accommodation Network

P.O. Box 6080

Morgantown, WV 26506-6080

(304) 293-7186 voice and TTY

800-526-7234 voice and TTY

800-ADA-WORK voice and TTY

(304) 293-5407 fax


janweb.icdi.wvu.edu/ and janweb.icdi.wvu.edu/espanol/ (in Spanish)

Operates as a service of the Office of Disability Employment Policy of the United States Department of Labor. Facilitates the employment and retention of workers with disabilities by providing information on job accommodations, disability legislation, small-business opportunities, and related subjects.

Library of Congress

National Library Service for the Blind and Physically Handicapped

1291 Taylor Street, NW

Washington, DC 20542-4960

(202) 707-5100


(202) 707-0744 TTY

(202) 707-0712 fax



Principal publications: Address List: Regional and Subregional Libraries for the Blind and Physically Handicapped, semiannual; Facts: Books for Blind and Physically Handicapped Individuals, annual; News, quarterly

Administers a free national library program offering braille and recorded materials for individuals with a visual or physical disability. Distributes reading materials and playback machines to a cooperating network of regional and subregional (local) libraries, where they are circulated to eligible borrowers.

National Council on Disability

1331 F St., NW, Suite 850

Washington, DC 20004

(202) 272-2004

(202) 272-2074 TTY

(202) 272-2022 fax



Makes recommendations to the United States Congress and president on policies, programs, and practices affecting Americans with disabilities and publishes reports on its multi-year study on implementing civil rights laws.

National Diabetes Information Clearinghouse

1 Information Way

Bethesda, MD 20892-3560

(301) 654-3327


(301) 907-8906 fax


diabetes.niddk.nih.gov/ and diabetes.niddk.nih.gov/spanish/index.asp (in Spanish)

Operates as an information dissemination service of the National Institute of Diabetes and Digestive and Kidney Diseases.

National Health Information Center

P.O. Box 1133

Washington, DC 20013-1133

(301) 565-4167


(301) 984-4256 fax


www.health.gov/nhic/ and www.healthfinder.gov/espanol/ (in Spanish)

Serves as a health-information referral service sponsored by the Office of Disease Prevention and Health Promotion (ODPHP). Has publications available for a small handling fee from the ODPHP Communication Support Center (P.O. Box 37366, Washington, DC 20013-7366; fax (301) 468-3028).

National Heart, Lung, and Blood Institute (NHLBI)

NHLBI Health Information Center

P.O. Box 30105

Bethesda, MD 20824-0105

(301) 592-8573

800-575-WELL heart-health information line

(240) 629 3255 TTY

(301) 592 8563 fax



Provides information on the prevention and treatment of heart, lung, and blood diseases, but does not provide physician referrals or counseling on specific medical problems. Supports and disseminates materials for the National High Blood Pressure Education Program, National Cholesterol Education Program, National Heart Attack Alert Program, National Asthma Education and Prevention Program, and NHLBI Obesity Education Initiative.

National Institute of Arthritis and Musculoskeletal and Skin Diseases

Information Clearinghouse

1 AMS Circle

Bethesda, MD 20892-3675

(301) 495-4484

877-226-4267 (877-22-NIAMS)

(301) 565-2966 TTY

(301) 718-6366 fax


www.niams.nih.gov/hi/ and www.niams.nih.gov/index_espanol.htm (in Spanish)

Provides information about various forms of arthritis and rheumatic disease and bone, muscle, and skin diseases. Distributes patient and professional education materials and refers people to other sources of information.

National Institute of Neurological Disorders and Stroke

NIH Neurological Institute

P.O. Box 5801

Bethesda, MD 20824

(301) 496-5751


(301) 468-5981 TTY


Conducts, fosters, and coordinates research on the causes, prevention, diagnosis, and treatment of neurological disorders and stroke and supports basic research in related scientific areas. Collects and disseminates research information related to neurological disorders.

National Institute on Deafness and Other Communication Disorders

31 Center Drive, MSC 2320

Bethesda, MD 20892-2320


800-241-1055 TTY


www.nidcd.nih.gov/ and www.nidcd.nih.gov/health/spanish/index.asp (in Spanish)

Conducts and supports biomedical and behavioral research and research training in the normal and disordered processes of hearing, balance, smell, taste, voice, speech, and language. Supports efforts to create devices that substitute for lost and impaired sensory and communication function.

National Institute on Disability and Rehabilitation Research

400 Maryland Avenue SW

Washington, DC 20202-2572

(202) 205-8134

(202) 205-4475 TTY

www.ed.gov/about/offices/list/osers/nidrr/index.html and

www.ed.gov/espanol/bienvenidos/es/index.html?src=gu (in Spanish)

Conducts and sponsors research and related activities to maximize the full inclusion, social integration, employment, and independent living of individuals with disabilities.

National Kidney and Urologic Diseases Information Clearinghouse
3 Information Way
Bethesda, MD 20892-3580
(301) 654-4415

(301) 907-8906 fax

kidney.niddk.nih.gov/ and kidney.niddk.nih.gov/spanish/index.asp (in Spanish)

Responds to inquiries about kidney and urologic diseases and distributes free publications at varying reading levels in English and Spanish.

Office of Minority Health Resource Center

P.O. Box 37337

Washington, DC 20013-7337


(301) 230-7199 TTY

(301) 251-2160 fax



Principal publication: Closing the Gap, bimonthly

Serves as an information and referral service on health issues of racial and ethnic minority populations of the United States. Distributes publications and conducts literature searches.

United States Architectural and Transportation Barriers Compliance Board (The Access Board)

1331 F Street NW, Suite 1000

Washington, DC 20004-1111

(202) 272-0080


(202) 272-0082 TTY

800-993-2822 TTY

(202) 272-0081 fax



Principal publication: Access Currents, bimonthly, in print and online

Develops and maintains accessibility requirements for the built environment, transit vehicles, telecommunications equipment, and electronic and information technology. Provides technical assistance and training on these guidelines and standards. Makes free publications available online and in alternate formats.

United States Department of Labor
Office of Disability Employment Policy

Frances Perkins Building

200 Constitution Avenue NW

Washington, DC 20210

(202) 693-7880

(202) 693-7881 TTY

866-487-2365 National Call Center

877-889-5627 TTY National Call Center

(202) 693-7888 fax


Works to expand access to training, employment supports, assistive technology, integrated employment, and small-business opportunities for people with disabilities. Builds partnerships with employers and state and local agencies to increase awareness of the benefits of hiring people with disabilities.

Selected Bibliography, 1999-2003

American Diabetes Association complete guide to diabetes: the ultimate home reference from the diabetes experts. 3rd ed., completely rev. Alexandria, VA: American Diabetes Association, 2002. 517p.

Batshaw, Mark L., ed. Children with disabilities. 5th ed. Baltimore, MD: Brookes Publishing Company, 2002. 912p.

Batshaw, Mark L., ed. When your child has a disability: the complete sourcebook of daily and medical care. Rev ed. Baltimore, MD: Brookes Publishing Company, 2001. 467p.

Bensing, Karen McNally. "Helping hands: caregiving resources." Library journal, v. 127, Apr. 1, 2002: 65-68.

The complete directory for people with disabilities: a comprehensive source book for individuals and professionals. 12th ed. Millerton, NY: Grey House Publishing, 2003. 1022p. (185 Millerton Road, 12546).

Cram, David L. Understanding Parkinson's disease: a self-help guide. Omaha, NE: Addicus Books, 1999. 171p.

Devinsky, Orrin. Epilepsy: patient and family guide. 2d ed. Philadelphia: F.A. Davis Company, 2002. 434p.

Hendler, Gail Y., and Patricia E. Gallagher. "Rx for aching joints: arthritis collections." Library journal, v. 127, Jan. 2002: 59-62.

Library of Congress. National Library Service for the Blind and Physically Handicapped. Building a library collection on visual and physical disabilities: basic materials and resources. Compiled by Carol Strauss. Washington: 1999. 45p. Free. Also available online at <ftp.loc.gov/pub/nls/reference/circulars/building.library>.

Library of Congress. National Library Service for the Blind and Physically Handicapped. Disability awareness: a selected bibliography. Compiled by Carol Strauss. Washington: 2003. 13p. Free. Also available online at <www.loc.gov/nls/reference/bibliographies/awareness.html>.

Matthews, Dawn D., ed. Disabilities sourcebook. Detroit, MI: Omnigraphics, 2000. 616p. (Health reference series).

Milam, Lorenzo. "Twenty-two influential books on disability." New mobility, v. 14, Aug. 2003: 24-28.

Palmer, Sara, Kay Harris Kriegsman, and Jeffrey B. Palmer. Spinal cord injury: a guide for living. Baltimore, MD: Johns Hopkins University Press, 2000. 290p.

Resources for adults with disabilities. 5th ed. Washington: National Dissemination Center for Children with Disabilities, 2003. 12p. Free. (Briefing paper). Also online at <www.nichcy.org/pubs/transum/ adttxt.htm>.

Resources for elders with disabilities. 5th ed. Winchester, MA: Resources for Rehabilitation, 2002. 312p. (22 Bonad Road, 01890).

Resources for people with disabilities and chronic conditions. 5th ed. Winchester, MA: Resources for Rehabilitation, 2002. 328p.

Schlachter, Gail Ann, and R. David Weber. Financial aid for the disabled and their families 2002-2004. El Dorado Hills, CA: Reference Service Press, 2002. 484p.

Schneider, Janet M. "Shaking up life: Parkinson's disease." Library journal, v. 128, Jan. 2003: 61-64.

Schoenbrodt, Lisa, ed. Children with traumatic brain injury: a parents' guide. Bethesda, MD: Woodbine House, 2001. 482p.

Tusler, Anthony, and others, eds. "The new paradigm of disability: a bibliography." Retrieved May 28, 2003. <www.aboutdisability.com/bib.html>.

United States Department of Justice. Civil Rights Division. Disability Rights Section. "A guide to disability rights laws." Retrieved June 5, 2003. <www.usdoj.gov/crt/ada/cguide.htm>.

Woodyard, Shawn, ed. Resources for people with disabilities: a national directory. 2d ed. Chicago: Ferguson Publishing Company, 2001. 2v.

Selected Internet Resources

Access to Disability Data (An InfoUse Project)


Has information on the prevalence, characteristics, and employment of people with disabilities in the United States. Includes data from the Chartbook on Disability in the United States, Chartbook on Work and Disability in the United States, Chartbook on Women and Disability in the United States.



Has links to the amputee listserv and to information such as books and magazines, sport and recreation, prostheses, and phantom pain.



Has online support groups and practical tips for caregivers.

Center for Disability Information and Referral (CEDIR)


Provides access to information to meet individuals' disability-related needs through print, nonprint, and human resources.

Children with Diabetes


Offers an online community for children, families, and adults with diabetes. Can submit questions to a team of health professionals.

Children with Disabilities


Offers information about advocacy, education, employment, health, housing, recreation, technical assistance, and transportation for developmental, physical, and emotional disabilities.

Cornucopia of Disability Information (CODI)


Consists of links to disability information and a repository of electronic disability documents, dating back to the early 1990s.

Disability History Museum


Promotes an understanding of the history of disability and the experience of people with disabilities. Contains digital versions of images, texts, and other artifacts related to disability history.



Has links to disability-related federal government resources.

disABILITY Information and Resources


Has links that include assistive devices, discount drug plans, federal government resources, legal resources, and housing resources.

Disability Social History Project


Includes information on the history of the disability rights movement, biographies of activists with disabilities, and bibliographies.

Disabled Women on the Web


Provides information, resources, and support for women with disabilities as part of the Disability Social History Project.

ERIC Clearinghouse on Disabilities and Gifted Education (ERIC EC)


Gathers and disseminates the professional literature, information, and resources on the education and development of individuals of all ages who have disabilities and/or who are gifted.


www.healthfinder.gov/ and www.healthfinder.gov/espanol/ (in Spanish)

Provides federal government and nonprofit health and human services information.

International Center for Disability Information, Disability tables


Has tables with disability data by state, the United States, and the world.

Internet Resources for Families of Children with Disabilities


Has links to laws, parent sites, specific disabilities, education, health, mental health, and transition to adulthood.

Internet Resources for Special Children


Has links to topics such as adaptive equipment, blind and visually impaired, diseases, employment, laws, and recreation.

Internet Stroke Center


Presents information on stroke care and research as a service of the Cerebrovascular Diseases Section of the Department of Neurology at Washington University School of Medicine.

Laurent Clerc National Deaf Education Center, Information on Deafness


Provides information on topics dealing with deafness and hearing loss.

National Center for the Dissemination of Disability Research (NCDDR)


Funds approximately 300 projects annually, across a range of research.

The Perspectives Network


Has articles and resources on acquired and traumatic brain injury.

Society for Manitobans with Disabilities. Library Services. Bibliographies.


Has bibliographies on disability-related topics, including arthritis, brain injury, epilepsy, parenting children with disabilities, Parkinson's disease, post-polio, and women with disabilities.

Spinal Cord Injury Information Network


Has links to spinal cord injury topics such as medical and psychological issues, equipment, accessibility, and publications.

Spinal Cord Injury Resource Center


Presents information on basic anatomy and physiology of the spinal cord and the complications resulting from a spinal cord injury.

Spinal Cord Injury Resources


Has links to organizations, treatment centers, chat rooms and listservs, magazines, articles, and books to buy.

Thou Shalt Honor Foundation


Has links to information for caregivers and to a nationwide directory of community services for caregivers.

Tourette Syndrome "Plus"


Has links to information on Tourette syndrome and other conditions.

United States Census Bureau: Americans with Disabilities: 1997


Provides an overview of the demographics and characteristics of America's population with disabilities. Released 2001, but not part of Census 2000.

United States Census Bureau: Disability


Has links to reports and data from Census Surveys.

WE MOVE™ (Worldwide Education and Awareness for Movement Disorders)


Serves as a resource for movement disorder information and activities.

Women with DisAbilities


Has links to information by topic such as abuse, parenting, and statistics, and by type of disability such as learning and visual impairment.

Carol Strauss
Reference Section

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Posted on 2015-02-04