Condition Specific Organizations & Resources
American Academy of Orthotists & Prosthetists1650 King Street, Suite 500
Alexandria, VA 22314
As the pre-eminent professional organization in orthotics and prosthetics, the mission of the American Academy of Orthotists and Prosthetists is to promote high standards of patient care through advocacy, education, and literature & research.
The Amputee Coalition of America900 E. Hill Avenue, Suite 285
Knoxville, TN 37915-2568
National Limb Loss Information Center is an information clearinghouse that provides comprehensive resources for people with limb loss, as well as their families, friends, and the health care professionals involved with their lives.
Amputee Resource Foundation of America6480 Wayzata Blvd.
Golden Valley, MN 55426
It is our mission to disseminate timely and useful information, to perform charitable services, and to conduct research to enhance productivity and quality of life for amputees in America.
American Amputee FoundationP.O. Box 250218
Little Rock, AR 72225
Information support service for amputees.
National Amputation Foundation38-40 Church Street
Malverne, NY 11565
A resource for veteran and civilian amputees. Its services include: legal counsel, vocational guidance and placement, social activities, liaison with outside groups, psychological aid, and training in the use of prosthetic devices.
National Amputee Golf Association (NAGA)P.O. Box 23285
Milwaukee, WI 53223-0285
The NAGA is the clearinghouse for all disabled golf activities in the USA and Internationally.
The National Odd Shoe Exchange (NOSE)3200 North Delaware Street
Chandler, AZ 85225
NOSE is a non-profit organization that exists to provide footwear and contacts for footwear to amputees and to people with feet of different sizes.
Prosthetics Outreach Foundation726 Broadway, Suite 306
Seattle, WA 98122-4311/ USA
Prosthetics Outreach Foundation is committed to sharing information that will improve treatment for all amputees and encourage contact among the rehabilitation professions that serve the needs of amputees around the world.
United Amputee Services Association Inc.P.O. Box 4277
Winter Park, FL 32793-4277
Its mission is to provide support and education to amputees in South and Central Florida. It offers hospital visitation, peer counseling and education to individuals who have had an amputation and to their families.
Ataxia Resource List
Friedreich's Ataxia Parents GroupE-mail: firstname.lastname@example.org
This website provides a forum for parents to share their unique experiences and knowledge about how they have learned to cope with ataxia in their family. This site also links to many ataxia resources.
International Network of Ataxia Friends (INTERNAF)71 Nansen Close, Old Hall
Warrington WA5 5PX
Cheshire, England, UK
INTERNAF is a mailing list for ataxia patients and their families, which serves as a support group and information exchange vehicle. This site also offers many answers and resources about ataxia.
National Ataxia Foundation2600 Fernbrook Lane, Suite 119
Minneapolis, MN 55447
The National Ataxia Foundation is a non-profit organization with the primary mission of encouraging and supporting research into Hereditary Ataxia, a group of neurological disorders which are chronic and progressive conditions affecting coordination. Its website offers many links to ataxia related resources on the Internet.
The ABI/TBI Information ProjectE-mail: email@example.com
Provides information on brain injury without preference to any particular person, thought, theory or belief. One may converse with others about ABI/TBI via message boards or simply use links and other helpful resources that are found here.
Association for the Rehabilitation of the Brain Injured (ARBI)3412 Spruce Drive SW
S.W. Calgary, AB CANADA
ARBI's mission is to offer an individualized rehabilitation program within a positive caring environment for persons with severe traumatic brain injury in order to enhance their quality of life.
Brain Injury Association105 North Alfred
Alexandria, Virginia 22314
This organization assists people with brain injury and their families to seek out needed resources and services. The Association offers a bimonthly newsletter, quarterly magazine, and also publishes the National Directory of Head Injury Rehabilitation Services (a listing of over 350 facilities and programs which meet the needs of those who have sustained brain injury).
The Brain TrainPhone: 804-320-0105
A publisher of software catalogs for brain injured rehabilitation.
The Centre for Neuro Skills2658 Mt. Vernon Avenue
Bakersfield, CA 93306
Fax: 805- 872-5150
The Centre for Neuro Skills is a head injury rehabilitation organization. Its webpage is a helpful and an extensive TBI resource guide.
High Tech Centers for the DisabledCalifornia Community Colleges
1109 Ninth Street
Sacramento, CA 95814
Assistive computer technologies for persons with acquired brain injury. It provides training and support to instructional specialists in California community colleges and other participating agencies. Training and support are available in the areas of computer access technologies, productivity, basic skills, and cognitive retraining software for persons with learning disabilities or acquired brain injuries.
National Association of State Head Injury Administrators (NASHIA)98 Corporate Lake Drive
Columbia, MO 65203
Phone: (573) 882-3807
Its purpose is to formulate and influence through collective action the establishment of sound national head injury policy, and to assist and serve state government administered head injury programs in the development and implementation of state and local prevention, rehabilitation and community support services programs and policies for persons with traumatic head injury and their families.
The Perspective NetworkP.O. Box 1859
Cumming, GA 30028-1859
The Perspectives Network's primary focus is positive communication between persons with brain injury, family members, care givers, friends of persons with brain injury, those many professionals who treat persons with brain injury and community members in order to create positive changes and enhance public awareness and knowledge of acquired/traumatic brain injury.
Traumatic Brain Injury Model SystemsNational Institute on Disability and Rehabilitation Research Washington, D.C.
Phone: 205-665-5555 or 408-295-9896
These research and demonstration grants focus primarily on developing and demonstrating a model system of care for persons with TBI stressing continuity and comprehensiveness of care and maintaining a standardized national database for innovative analyses of TBI treatment and outcomes.
University of Washington Department of Rehabilitation MedicineBox 356490
Seattle, WA 98195-6490
The Brain Injury Rehabilitation Clinics at the University of Washington Medical Center and Harborview Medical Centers offer a wide range of services directed toward helping clients 18 years of age and older cope with the complex and long-term consequences of brain injury.
Conductive EducationWebsite: conductivelearningcenter.org/about/what-is-conductive-education/
Conductive education is a unique system of teaching and learning for children with motor disorders such as cerebral palsy and Spina Bifida. It is designed to improve motor skills and increase independence of many aspects of common living. This site offers further resources and information on conductive education.
United Cerebral Palsy Associations, Inc. (UCP)1825 K Street NW Suite 600
Washington, DC 20006
Phone: 800.872.5827 / 202.776.0406
United Cerebral Palsy (UCP) educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities.
Computer Literate Advocates for Multiple Sclerosis (CLAMS)P.O. Box 10024
Bainbridge Is, WA 98110
CLAMS provides computer information and communication for people with MS. Operated by people with MS, it strives to bring those with MS out of isolation and into computer communications for support, companionship, and information with others sharing this disease.
The Multiple Sclerosis Association of America (MSAA)706 Haddonfield Road
Cherry Hill, NJ 08002
Phone: 800-Learn MS or 800-833-4672
MSAA helps people with MS, their friends and families to address the day-to-day needs of those with MS. It also designs, builds, and maintains barrier-free housing complexes open to all disabled people, and is involved in programs and research that affect all with neurological disorders.
Multiple Sclerosis Foundation (MSF)6350 North Andrews Avenue
Fort Lauderdale, FL 33309
Phone: 800-441-7055 or 954-776-6805
This MS support organization provides information and support services for persons with MS, their families and caretakers. Services include: a toll free support line, home care assistance program, newsletters, MS updates, an in-house library, networking and referral services.
A place on the Internet where people with MS, their families and friends can find information and community support. MSWorld offers a live MS chat forum, member e-mail exchange service, MS library resources, technical support, on-line MS web magazine, message boards, and more.
Multiple Sclerosis Society of Canada250 Bloor Street East, Suite 1000
CANADA M4W 3P9
Phone: 800-268-7582 or 416-922-6065
E-mail: firstname.lastname@example.org Website: mssociety.ca
The Multiple Sclerosis Society of Canada supports both MS research and services for people with MS and families. The seven regional divisions and more than 130 chapters and units provide direct services, carry out social action activities, and promote public awareness in their communities.
The National MS Society733 Third Avenue
New York, NY 10017
This private organization is a supporter of basic and clinical scientific research to cure, prevent, and treat MS. Local chapters and branches offer information and referrals, peer support, professional counseling, loans of medical equipment, physical fitness programs, legislative advocacy, assistance obtaining benefits, employment assistance, and social or recreational events. Their offices will answer questions, offer referrals to local resources and send educational literature upon request.
MS International FederationWebsite: msif.org
The International Federation of Multiple Sclerosis Societies (IFMSS) an international body linking the activities of national MS Societies around the world. This international cooperative effort utilizes experts in all areas of MS to offer current and useful information to health professionals, researchers, persons with MS, their families, and the general public.
Neurological Disorders & Stroke
National Institute of Neurological Disorders and Stroke (NINDS)P.O. Box 5801
Bethesda, MD 20824
Phone: 800-352-9424 or 301-496-5751
Website: www.ninds.nih.gov NINDS is the leading supporter of biomedical research on disorders of the brain and nervous system, providing information for patients, clinicians and scientists.
International Polio Network (IPN)4207 Lindell Boulevard, #110
Saint Louis, MO 63108-2915
Coordinated by Gazette International Networking Institute (GINI), IPN disseminates information and organizes periodic international conferences about the late effects of polio, encourages research, and promotes networking among the post-polio community worldwide. IPN publishes the quarterly Polio Network News and the annual Post-Polio Directory.
The Lincolnshire Post-Polio Network69 Woodvale Avenue
Lincoln Lincs. LN6 3RD
Phone: +44 (0) 1522 888601
Fax: +44 (0) 870 1600840
The core of this website is an archive of well over one hundred full text articles on Post-Polio conditions. A comprehensive catalogue of Polio and Post-Polio resources on the Internet and elsewhere is also offered.
Polio Experience Network (PEN)S. 508 Shoreline Drive
Liberty Lake, WA 99019
A Washington state-registered charity whose goals include giving emotional and informational support to polio survivors, their families and friends, and helping to educate the medical community and the public in general about post-polio syndrome. It publishes a newsletter, PEN & INK (Inspiration, news & knowledge). The website has many useful links to organizations, forums, personal sites, and support groups (both in the U.S.A. and internationally).
The P.R.Y.S. Foundation, Inc.P.O. Box 18081
Missoula, MT 59802
Polio - Remember Your Strength is a non-profit private foundation, created to assist persons experiencing Post Polio Syndrome. P.R.Y.S. is a site maintained for the purposes of education, communication, and as a forum to meet other PPS people around the world. The P.R.Y.S. Foundation Inc. will also help individuals to obtain needed medical equipment, medical payments, and medication.
Spinal Cord Injury
American Spinal Injury Association (ASIA)345 E. Superior St., Room 1436
Chicago, IL 60611
(Educational based, research in management, provides medium for professional exchange of clinical information).
Christopher & Dana Reeve Foundation636 Morris Turnpike Suite 3A
Short Hills NJ 07078
DISABILITY RIGHTS EDUCATION AND DEFENSE FUNDMain Office:
2212 Sixth Street
Berkeley, CA 94710
Phone: 510-644-2555 V/TTY
1629 "K" Street N.W
Washington, DC 20006
(Advocate for rights of disabled, monitor and strengthen laws, research into medical devices, consumer laws)
GAZETTE INTERNATIONAL NETWORKING INSTITUTE4207 Lindell Blvd #110
St. Louis, MO 63110-1406
(Publishes Rehabilitation Gazette and International Ventilator Users News)
Head Injury Hotline212 Pioneer Building
Seattle, WA 98104
MOVE INTERNATIONAL1300 17th Street - City Centre
Bakersfield, CA 93301
NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE NATIONAL INSTITUTES OF HEALTHGeneral Information:
NIH Neurological Institute
P.O. Box 5801
Bethesda, MD 20824
Phone: (800) 352-9424
Website: www.ninds.nih.gov (NIH biomedical research facility, information and technical materials available)
NATIONAL REHAB INFO CENTER (NARIC)1010 Wayne Avenue, Suite 800
Silver Spring, MD 20910
Phone: 800-346-2742 (V)
Website: www.naric.com (For 20 years, the staff of the National Rehabilitation Information Center (NARIC) has collected and disseminated the results of federally funded research projects.)
NATIONAL SPINAL CORD INJURY ASSOCIATION8701 Georgia Avenue, Suite 500
Silver Spring, Maryland 20910
(Membership, newsletter, update research information)
NATIONAL SPINAL CORD INJURY HOTLINE220 Cernan Drive
Baltimore, MD 21207
(Information referral service and peer support)
PARALYZED VETERANS OF AMERICA801 18th Street NW
Washington, DC 20006
Website: www.pva.org (Information and advocacy agency; supports and funds research on the treatment, rehabilitation, and regeneration of spinal cord dysfunction)
SISTER KENNEY INSTITUTE DIVISION OF ABBOTT-NORTHWESTERN HOSPITAL800 East 28th Street
Minneapolis, MN 55407
SPINAL CORD INJURY (SCI) CONNECTIONServes as an online meeting place for individuals who have the same or similar injuries.
Spinal Cord Injury ResourcesWebsite: www.makoa.org/sci.htm An extensive list of resources with links to many other spinal cord injury sites.
SPINAL CORD INJURY NETWORK INTERNATIONAL3911 Princeton Drive
Santa Rosa, CA 95406
SPINAL CORD SOCIETY19051 County Highway 1
Fergus Falls, Minnesota 56537-7609
Phone: 218-739-5252 or 218-739-5261
Website: scsus.org (Membership and monthly newspaper; research & information center, data referral system)