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Home > Reference > Circulars > Physical Disabilities
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.
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
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,
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
Principal publication: Breaking New Ground News Note, 3 issues/year, in print
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) 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) 515-7330 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) 783-8250 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) 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) 502-5205 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
National Service and Legislative Headquarters
807 Maine Avenue SW
Washington, DC 20024
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.
230 West Monroe Street, Suite 1800
Chicago, IL 60606
(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
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) 520-5136 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.
[formerly: Recording for the Blind and Dyslexic]
20 Roszel Road
Princeton, NJ 08540
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
Bakersfield, CA 93301-4533
(661) 636-4045 fax
Principal publication: MOVE International Newsletter, semiannual, in print and
Helps children and adults with severe disabilities to sit, stand, and walk
through instruction and adaptive equipment that enhances independent
National Alliance for Caregiving
4720 Montgomery Lane, 5th Floor
Bethesda, MD 20814
(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) 408-9520 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) 525-4153 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) 656-4464 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) 293-5968 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) 836-0849 TTY
(703) 836-0848 fax
Principal publications: Contemporary Rehab, bimonthly; Journal of
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
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
(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
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
1700 North Moore Street, Suite 1540
Arlington, VA 22209-1903
(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.
25 East 21st Street
New York, NY 10010
(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) 864-0706 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) 828-6706 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) 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) 666-8367 fax
Serves as an information clearinghouse and referral center for amputees and
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,
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
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) 586-7550 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) 803-0414 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.
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) 474-0292 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) 355-1826 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-
Amputee Coalition of America
900 East Hill Avenue, Suite 285
Knoxville, TN 37915-2568
(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
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
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.
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
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
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
P.O. Box 220398
Charlotte, NC 28222-3098
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
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.
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
(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
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) 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) 917-1835 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) 887-3667 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) 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
National Organization for Rare Disorders
55 Kenosia Avenue
P.O. Box 1968
Danbury, CT 06813-1968
(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) 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) 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) 649-1328 fax
www.stroke.org and 184.108.40.206/NationalStroke/Spanish.htm (in Spanish) and 220.127.116.11/NationalStroke/French.htm (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) 923-4778 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) 734-8522 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) 534-5070 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) 944-3295 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
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) 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
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) 264-9494 fax
Principal publications: Exceptional children, quarterly; Teaching exceptional
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
(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
(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
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.
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
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) 488-7075 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) 707-0744 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
National Council on Disability
1331 F St., NW, Suite 850
Washington, DC 20004
(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) 907-8906 fax
diabetes.niddk.nih.gov/ and diabetes.niddk.nih.gov/spanish/index.asp (in
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) 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
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
1 AMS Circle
Bethesda, MD 20892-3675
(301) 565-2966 TTY
(301) 718-6366 fax
www.niams.nih.gov/hi/ and www.niams.nih.gov/index_espanol.htm (in
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) 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
www.nidcd.nih.gov/ and www.nidcd.nih.gov/health/spanish/index.asp (in
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) 205-4475 TTY
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) 907-8906 fax
kidney.niddk.nih.gov/ and kidney.niddk.nih.gov/spanish/index.asp (in
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) 272-0082 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) 693-7881 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
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
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/
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,
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.
United States Department of Justice. Civil Rights Division. Disability Rights
Section. "A guide to disability rights laws." Retrieved June 5, 2003.
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
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
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.