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Condition Specific Organizations & Resources

Amputee

American Academy of Orthotists & Prosthetists

1650 King Street, Suite 500
Alexandria, VA 22314
Phone: 703-836-7114
Fax: 703-836-0838
E-mail: academy@oandp.com
Website: www.oandp.com
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 America

900 E. Hill Avenue, Suite 285
Knoxville, TN 37915-2568
Phone: 423-524-8772
Fax: 423-525-7917
E-mail: acainfo@amputee-coalition.org
Website: www.amputee-coalition.org
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 America

6480 Wayzata Blvd.
Golden Valley, MN 55426
E-mail: info@amputeeresource.org
Website: www.amputeeresource.org
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 Foundation

P.O. Box 250218
Hillcrest Station
Little Rock, AR 72225
Phone: 501-666-2523
Fax: 501-666-8367
Website: www.familyvillage.wisc.edu/lib_ampu.htm
Information support service for amputees.

National Amputation Foundation

38-40 Church Street
Malverne, NY 11565
Phone: 516-887-3600
Fax: 516-887-3667
Website: www.nationalamputation.org
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
Phone: 800-633-NAGA
Fax: 414-376-1268
E-mail: info@nagagolf.org
Website: www.nagagolf.org
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
Phone: 602-892-3484
Fax: 602-892-3568
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 Foundation

726 Broadway, Suite 306
Seattle, WA 98122-4311/ USA
Phone: (206)726-1636
Fax: (206)726-1637
E-mail: pofsea2@aol.com
Website: www.pofsea.org/Links/Links.html
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
Phone: 407-678-2920
Fax: 407-678-2203
E-mail: uasa@oandp.com
Website: www.oandp.com/organiza/uasa/index.htm
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 Group

E-mail: fapginfo@fortnet.org
Website: www.fortnet.org/fapg/
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
E-mail: owner-internaf@connect.org.uk
Website: www.internaf.org
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 Foundation

2600 Fernbrook Lane, Suite 119
Minneapolis, MN 55447
Phone: 612-553-0020
Fax: 612-553-0167
E-mail: naf@mr.net
Website: www.ataxia.org
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.

Brain Injury

The ABI/TBI Information Project

E-mail: lburns@sasquatch.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
Phone: 403-242-7116
Fax: 403-242-7478
E-mail: arbi@cadvision.com
Website: www.arbi.ab.ca
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 Association

105 North Alfred
Alexandria, Virginia 22314
Phone: 703-236-6000
or 800-444-6443
Fax: 703-236-6001
E-mail: FamilyHelpline@biausa.org
Website: www.biausa.org
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 Train

Phone: 804-320-0105
A publisher of software catalogs for brain injured rehabilitation.

The Centre for Neuro Skills

2658 Mt. Vernon Avenue
Bakersfield, CA 93306
Phone: 800-922-4994
or 805-872-3408
Fax: 805- 872-5150
E-mail: cns@neuroskills.com
Website: www.neuroskills.com/~cns/
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 Disabled

California Community Colleges
Chancellor's Office
1109 Ninth Street
Sacramento, CA 95814
Phone: 916-445-8752
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
E-mail: svaughn@services.state.mo.us Website: www.nashia.org
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 Network

P.O. Box 1859
Cumming, GA 30028-1859
Phone: 770-844-6898
Fax: 770-844-6898
E-mail: TPN@tbi.org
Website: www.tbi.org
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.

TBI, ABI, and EPILEPSY HOME AWAY FROM HOME

Debbie Wilson
121 Oak Avenue
Hueytown, Alabama 35023
Phone: 205-491-0401
E-mail: debbie@canddwilson.com
An inspirational home page created by Debbie Wilson, a TBI survivor. This site is filled with links to important information on TBI, ABI and Epilepsy as well as personal stories, poems and quotes that will encourage any visitor.

Traumatic Brain Injury Model Systems

National Institute on Disability and Rehabilitation Research Washington, D.C.
Phone: 205-665-5555 or 408-295-9896
Fax: 408-295-9913
E-mail: tbisci@tbi-sci.org
Website: www.tbindc.org
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 Medicine

Box 356490
Seattle, WA 98195-6490
Phone: 206-543-3600
Fax: 206-685-3244
E-mail: rehab@u.washington.edu
Website: depts.washington.edu/rehab/
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.

Cerebral Palsy

About Cerebral Palsy

Website: www.about-cerebral-palsy.org
Describes Cerebral Palsy causes, symptoms, definition, diagnosis, and treatment. Provides details about Spastic, Ataxic, and Athetoid Cerebral Palsy in children.

Conductive Education

Information Homepage
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.

Susie's Cerebral Palsy Page

Website: www.susiecphome.com/home.html A fun and inspirational personal cerebral palsy homepage.

United Cerebral Palsy Associations, Inc. (UCP)

1660 L Street NW #700
Washington, DC 20036
Phone: 800-USA-5UCP
202-973-7197 (TDD)
Fax: 202-776-0414
Website: www.ucpa.org
UCP and its nationwide network of 150 affiliate partners strive to ensure the inclusion of persons with disabilities in every facet of society - from the web to the workplace, from the classroom to the community. Its mission is to advance the independence, productivity and full citizenship of people with cerebral palsy and other disabilities, through commitment to the principles of independence, inclusion and self-determination.

Multiple Sclerosis

Computer Literate Advocates for Multiple Sclerosis (CLAMS)

P.O. Box 10024
Bainbridge Is, WA 98110
E-mail: sounder@nwinet.com
Website: www.clams.org
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
Fax: 609-661-9797
E-mail: msaa@msaa.com
Website: www.msaa.com
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
E-mail: support@msfacts.org
Website: www.msfacts.org
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.

MSnet

E-mail: rleaf@msnet.org
Website: www.msnet.org
This Internet site is designed to share information about Multiple Sclerosis with an emphasis on non-visible symptoms. This site features MS news, links, books, chat and discussion rooms.

MSWorld

E-mail: msworld@msworld.org
Website: www.msworld.org
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 Canada

250 Bloor Street East, Suite 1000
Toronto, Ontario
CANADA M4W 3P9
Phone: 800-268-7582 or 416-922-6065
Fax: 416-922-7538
E-mail: info@mssoc.ca Website: www.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 Society

733 Third Avenue
New York, NY 10017
Phone: 800-344-4867
E-mail: info@nmss.org
Website: www.nmss.org
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.

World of Multiple Sclerosis (WoMS)

E-mail: info@ifmss.org.uk
Website: www.ifmss.org.uk
WoMS is the internet site of 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.

Polio

International Polio Network (IPN)

4207 Lindell Boulevard, #110
Saint Louis, MO 63108-2915
Phone: 314-534-0475
Fax: 314-534-5070
E-mail: gini_intl@msn.com
Website: www.post-polio.org
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 Network

69 Woodvale Avenue
Lincoln Lincs. LN6 3RD
United Kingdom
Phone: +44 (0) 1522 888601
Fax: +44 (0) 870 1600840
E-mail: linpolio@legend.co.uk
Website: www.zynet.co.uk/ott/polio/lincolnshire/
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
Phone: 508-255-6131
E-mail: polionet@polionet.org
Website: polionet.org
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
Phone: 406-626-4600
E-mail: info@prys.net
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
Phone: 312-238-1242
FAX: 312-238-0869
Website: www.asia-spinalinjury.org
(Educational based, research in management, provides medium for professional exchange of clinical information).

Christopher Reeve Paralysis Foundation

500 Morris Avenue
Springfield, NJ 07081
Phone: 800-225-0292
FAX: 973-912-9433
Website: www.apacure.com

Cure Paralysis Now

E-mail: info@cureparalysis.org

DIRECT LINK

PO Box 1036 Solvang, CA 93464
Phone: 805-688-1603
(Information and data retrieval system)

DISABILITY RIGHTS EDUCATION AND DEFENSE FUND

Main Office:
2212 Sixth Street
Berkeley, CA 94710
Phone: 510-644-2555 V/TTY
FAX: 510-841-8645
E-mail: dredf@dredf.org
Government Affairs:
1629 "K" Street N.W
Suite 802
Washington, DC 20006
Phone: 202-986-0375
FAX: 202-775-7465
Website: www.dredf.org
(Advocate for rights of disabled, monitor and strengthen laws, research into medical devices, consumer laws)

GAZETTE INTERNATIONAL NETWORKING INSTITUTE

4207 Lindell Blvd #110
St. Louis, MO 63110-1406
Phone: 314-534-0475
(Publishes Rehabilitation Gazette and International Ventilator Users News)

Head Injury Hotline

212 Pioneer Building
Seattle, WA 98104
Phone: 206-621-8558
E-mail: brain@headinjury.com
Website: www.headinjury.com

MOVE INTERNATIONAL

1300 17th Street - City Centre
Bakersfield, CA 93301
Phone: 800-397-MOVE(6683)
E-mail: move-international@kern.org
Website: www.move-international.org

NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE NATIONAL INSTITUTES OF HEALTH

General 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 REHABILITATION ASSOCIATION

633 S Washington Street
Alexandria, VA 22314
Phone: 703-836-0850 VOICE
703-836-0849 TDD
Fax 703/836-0848
E-mail: info@nationalrehab.org
Website: www.nationalrehab.org/website/index.html
(Membership organization; offers 2 publications)

NATIONAL REHAB INFO CENTER (NARIC)

1010 Wayne Avenue, Suite 800
Silver Spring, MD 20910
Phone: 800-346-2742 (V)
301-562-2400 (V)
301-495-5626 (TT)
FAX: 301-562-2401
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 ASSOCIATION

8701 Georgia Avenue, Suite 500
Silver Spring, Maryland 20910
Phone: 301-588-6959
FAX: 301-588-9414
E-mail: resource@spinalcord.org
Website: www.spinalcord.org
(Membership, newsletter, update research information)

NATIONAL SPINAL CORD INJURY HOTLINE

220 Cernan Drive
Baltimore, MD 21207
800-526-3456
E-mail: scihotline@aol.com
(Information referral service and peer support)

PARALYZED VETERANS OF AMERICA

801 18th Street NW
Washington, DC 20006
Phone: 800-424-8200
202-872-1300
E-mail: info@pva.org
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 HOSPITAL

800 East 28th Street
Minneapolis, MN 55407
612-863-4457

SPINAL CORD INJURY (SCI) CONNECTION

Serves as an online meeting place for individuals who have the same or similar injuries.

Spinal Cord Injury Resources

Website: www.eskimo.com/~jlubin/disabled/sci.htm An extensive list of resources with links to many other spinal cord injury sites.

SPINAL CORD INJURY NETWORK INTERNATIONAL

3911 Princeton Drive
Santa Rosa, CA 95406
Phone: 1-800-548-2673
E-mail: spinal@sonic.net

SPINAL CORD SOCIETY

19051 County Highway 1
Fergus Falls, Minnesota 56537-7609
Phone: 218-739-5252 or 218-739-5261
Fax: 218-739-5262
E-mail: scschicago@neodot.com (Membership and monthly newspaper; research & information center, data referral system)

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