Physical Disabilities 

NLS Reference Circulars
Physical Disabilities: Information and Advocacy Organizations 2003 

Introduction
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.

Contents

     General Organizations 
     Organizations on Specific Diseases and Injuries 
     Organizations Focusing on Children with Special Needs 
     Federal Agencies 
     Selected Bibliography, 1999-2003 
     Selected Internet Resources 
     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
     www.aapd.com/

     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
     ylayden@chtop.org
     www.archrespite.org/

     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
     800-545-2433
     (312) 944-8085 fax
     ascla@ala.org
     www.ala.org/ala/ascla/ascla.htm

     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
     AHEAD@ahead.org
     www.ahead.org/

     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
     800-825-4264
     bng@ecn.purdue.edu
     abe.www.ecn.purdue.edu/ABE/Extension/BNG/

     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
     crowd@bcm.tmc.edu
     www.bcm.tmc.edu/crowd/

     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
     800-647-6777
     (919) 515-7330 fax
     cud@ncsu.edu
     www.design.ncsu.edu/cud/

     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
     Info@c-c-d.org
     www.c-c-d.org/

     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
     dredf@dredf.org
     www.dredf.org/

     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
     distats@itsa.ucsf.edu
     dsc.ucsf.edu/main.php

     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
     www.dav.org/

     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
     800-221-6827
     (312) 726-4258 TTY
     (312) 726-1494 fax
     www.easter-seals.org/

     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
     info@UnitedSpinal.ORG
     www.unitedspinal.org/

     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
     800-445-8106
     info@caregiver.org
     www.caregiver.org/caregiver/jsp/home.jsp
     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
     800-544-3284
     (202) 973-0908 fax
     askheath@heath.gwu.edu
     www.heath.gwu.edu/

     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
     ilru@ilru.org
     www.bcm.tmc.edu/ilru/

     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.

     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
     move-international@kern.org 
     www.move-international.org/

     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
     info@caregiving.org
     www.caregiving.org/

     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
     info@napas.org
     www.napas.org/

     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
     ncil@ncil.org
     www.ncil.org/

     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
     ncpie@ncpie.com
     www.talkaboutrx.org/

     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
     800-896-3650
     (301) 942 2302 fax
     info@nfcacares.org
     www.nfcacares.org/

     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
     ability@nod.org
     www.nod.org/

     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
     info@nationalrehab.org
     www.nationalrehab.org/website/index.html

     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
     800-346-2742 
     naricinfo@heitechservices.com 
     www.naric.com/

     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
     info@nish.org
     www.nish.org/

     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
     800-424-8200
     800-232-1782 PVA Health Care Hotline
     info@pva.org
     www.pva.org/

     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. 

     Recording for the Blind and Dyslexic
     20 Roszel Road
     Princeton, NJ 08540
     (609) 520-8096
     800-221-4792
     custserv@rfbd.org
     www.rfbd.org/

     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.

     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
     info@resna.org
     www.resna.org/ 

     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
     rehabintl@rehab-international.org
     www.rehab-international.org/

     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
     RTCIL@ku.edu
     www.rtcil.org/

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

     TASH
     29 West Susquehanna Avenue, Suite 210
     Baltimore, MD 21204
     (410) 828-8274
     (410) 828-6706 fax
     www.tash.org/

     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
     rural@ruralinstitute.umt.edu
     ruralinstitute.umt.edu/

     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
     wid@wid.org
     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
     800-338-3633
     (312) 424-2427 fax
     aade@aadenet.org
     www.aadenet.org/

     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
     800-749-2257
     (813) 636-8122 fax
     info@aakp.org
     www.aakp.org/

     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)
     AskADA@diabetes.org
     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
     info@aesnet.org
     www.aesnet.org/

     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)
     www.americanheart.org/

     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
     helpline@akfinc.org
     www.kidneyfund.org/

     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
     aps@unitedspinal.org
     www.apssci.org/

     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.
     www.apdaparkinson.com/
     National Office
     1250 Hylan Boulevard, Suite 4B
     Staten Island, NY 10305
     800-223-2732
     (718) 981-4399 fax
     apda@apdaparkinson.org

     West Coast Office
     10850 Wilshire Boulevard., Suite 730
     Los Angeles, CA 90024-4319
     (310) 474-5391
     800-908-2732
     (310) 474-0292 fax
     apdawc@earthlink.net

     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
     www.asia-spinalinjury.org/home/index.html

     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
     acainfo@amputee-coalition.org
     www.amputee-coalition.org/

     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
     info@amputeeresource.org
     www.amputeeresource.org/

     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
     800-782-4747
     alsinfo@alsa-national.org
     www.alsa.org/

     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
     800-283-7800
     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
     familyhelpline@biausa.org.
     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
     brain@headinjury.com
     www.headinjury.com/

     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
     800-442-3437
     www.cfids.org/
 
    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
     chuck@charlesray.g12.com
     www.charlesray.g12.com/

     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
     800-225-0292
     800-539-7309 Paralysis Resource Center
     info@paralysis.org
     www.apacure.com/

     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
     info@cff.org
     www.cff.org/

     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
     800-332-1000
     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
     800-342-0330
     (810) 714-0354 fax
     info@fscip.org
     www.fscip.org/

     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
     hdsainfo@hdsa.org
     www.hdsa.org/

     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
     lupusinfo@lupus.org
     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
     msaa@msaa.com
     www.msaa.com/

     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
     888-MS-FOCUS
     (954) 351-0630 fax
     support@msfocus.org
     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
     800-572-1717
     mda@mdausa.org
     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
     800-541-5454
     (651) 917-1835 fax
     mgfa@myasthenia.org
     www.myasthenia.org/

     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
     amps76@aol.com
     www.nationalamputation.org/

     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
     800-922-4622
     (212) 267-2812 fax
     naa@aphasia.org
     www.aphasia.org/

     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
     800-622-9010
     (212) 689-9261 fax
     info@kidney.org
     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
     800-999-6673
     (203) 797-9590 TTY
     (203) 798-2291 fax
     orphan@rarediseases.org
     www.rarediseases.org/

     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
     800-327-4545
     (305) 243-4403 fax
     mailbox@parkinson.org
     www.parkinson.org/

     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
     800-962-9629
     (301) 881-9817 fax
     info@spinalcord.org
     www.spinalcord.org/

     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 209.107.44.93/NationalStroke/Spanish.htm (in Spanish) and
     209.107.44.93/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) 923-4700
     800-457-6676
     (212) 923-4778 fax
     info@pdf.org
     www.pdf.org/

     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 
     800-786-2958 
     (408) 734-8522 fax
     www.parkinsonsinstitute.org/

     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
     info@post-polio.org
     www.post-polio.org

     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
     800-621-3141
     (202) 944-3295 fax
     sbaa@sbaa.org
     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
     members.aol.com/scsweb/

     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)
     www.tsa-usa.org/

     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
     800-872-5827
     (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 
     staff@birthdefects.org
     www.birthdefects.org/

     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
     service@cec.sped.org
     www.cec.sped.org/

     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
     888-835-5669
     (505) 872-4780 fax
     kidshealth@familyvoices.org
     www.familyvoices.org/

     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
     info@jdrf.org
     www.jdrf.org/

     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
     askus@marchofdimes.com
     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
     nichcy@aed.org
     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
     ccdinfo@cdc.gov
     www.cdc.gov/nccdphp/

     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
     888-232-5929
     (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
     jan@jan.wvu.edu
     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 
     800-424-8567 
     (202) 707-0744 TTY
     (202) 707-0712 fax
     nls@loc.gov
     www.loc.gov/nls

     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
     mquigley@ncd.gov
     www.ncd.gov/

     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
     800-860-8747
     (301) 907-8906 fax
     ndic@info.niddk.nih.gov
     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 
     800-336-4797
     (301) 984-4256 fax
     info@nhic.org
     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
     nhlbiinfo@rover.nhlbi.nih.gov
     www.nhlbi.nih.gov/health/infoctr/

     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
     niamsinfo@mail.nih.gov
     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
     800-352-9424
     (301) 468-5981 TTY
     www.ninds.nih.gov/

     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
     800-241-1044 
     800-241-1055 TTY
     nidcdinfo@nidcd.nih.gov
     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
     800-891-5390
     (301) 907-8906 fax
     nkudic@info.niddk.nih.gov
     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
     800-444-6472
     (301) 230-7199 TTY
     (301) 251-2160 fax
     info@omhrc.gov
     www.omhrc.gov/omhrc/

     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
     800-872-2253
     (202) 272-0082 TTY
     800-993-2822 TTY
     (202) 272-0081 fax
     info@access-board.gov
     www.access-board.gov/

     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
     www.dol.gov/odep/

     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)
     www.infouse.com/disabilitydata/ 
     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. 

     Amputee-Online.com
     www.amputee-online.com/
     Has links to the amputee listserv and to information such as books and magazines, sport
     and recreation, prostheses, and phantom pain.

     Caregiving.com
     www.caregiving.com/
     Has online support groups and practical tips for caregivers.

     Center for Disability Information and Referral (CEDIR)
     www.iidc.indiana.edu/cedir/
     Provides access to information to meet individuals' disability-related needs through print,
     nonprint, and human resources.

     Children with Diabetes
     www.childrenwithdiabetes.com/
     Offers an online community for children, families, and adults with diabetes. Can submit
     questions to a team of health professionals.

     Children with Disabilities 
     www.childrenwithdisabilities.ncjrs.org/
     Offers information about advocacy, education, employment, health, housing, recreation,
     technical assistance, and transportation for developmental, physical, and emotional
     disabilities.

     Cornucopia of Disability Information (CODI)
     codi.buffalo.edu/
     Consists of links to disability information and a repository of electronic disability
     documents, dating back to the early 1990s.

     Disability History Museum
     www.disabilitymuseum.org/
     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.

     DisabilityInfo.gov
     www.disabilityinfo.gov/
     Has links to disability-related federal government resources.
     disABILITY Information and Resources
     www.makoa.org/
     Has links that include assistive devices, discount drug plans, federal government
     resources, legal resources, and housing resources.

     Disability Social History Project
     www.disabilityhistory.org/dshp.html
     Includes information on the history of the disability rights movement, biographies of
     activists with disabilities, and bibliographies.

     Disabled Women on the Web
     www.disabilityhistory.org/dwa/
     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) 
     ericec.org/

     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.

     healthfinder 
     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
     www.icdi.wvu.edu/disability/tables.html#datatables
     Has tables with disability data by state, the United States, and the world.

     Internet Resources for Families of Children with Disabilities
     web.simmons.edu/~janec/520/index.html
     Has links to laws, parent sites, specific disabilities, education, health, mental health, and
     transition to adulthood.

     Internet Resources for Special Children
     www.irsc.org
     Has links to topics such as adaptive equipment, blind and visually impaired, diseases,
     employment, laws, and recreation.
     Internet Stroke Center
     www.strokecenter.org/
     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
     clerccenter.gallaudet.edu/InfoToGo/
     Provides information on topics dealing with deafness and hearing loss.

     National Center for the Dissemination of Disability Research (NCDDR)
     www.ncddr.org/
     Funds approximately 300 projects annually, across a range of research.
     The Perspectives Network
     www.tbi.org/
     Has articles and resources on acquired and traumatic brain injury.

     Society for Manitobans with Disabilities. Library Services. Bibliographies.
     www.smd-services.com/information/bibliographies.html
     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
     www.spinalcord.uab.edu/
     Has links to spinal cord injury topics such as medical and psychological issues,
     equipment, accessibility, and publications.

     Spinal Cord Injury Resource Center
     www.spinalinjury.net/
     Presents information on basic anatomy and physiology of the spinal cord and the
     complications resulting from a spinal cord injury.

     Spinal Cord Injury Resources
     www.makoa.org/sci.htm
     Has links to organizations, treatment centers, chat rooms and listservs, magazines,
     articles, and books to buy.

     Thou Shalt Honor Foundation
     www.thoushalthonor.org/
     Has links to information for caregivers and to a nationwide directory of community
     services for caregivers.

     Tourette Syndrome "Plus"
     www.tourettesyndrome.net/
     Has links to information on Tourette syndrome and other conditions.

     United States Census Bureau: Americans with Disabilities: 1997
     www.census.gov/hhes/www/disable/sipp/disable97.html
     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
     www.census.gov/hhes/www/disability.html
     Has links to reports and data from Census Surveys.

     WE MOVE  (Worldwide Education and Awareness for Movement Disorders)
     www.wemove.org/
     Serves as a resource for movement disorder information and activities.

     Women with DisAbilities
     www.4woman.gov/wwd/index.htm
     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
     2003