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ADD/ADHD
Attention Deficit Disorder Association (ADDA)
1788 Second Street, Suite 200
Highland Park, IL 60035
Phone: (847) 432-ADDA
Fax: (847) 432-5874
E-mail: mail@add.org
Web: http://www.add.org
Info: Non-profit, membership organization, ADDA is focused on the needs of AD/HD adults and young adults with AD/HD. Website contains articles, personal stories, interviews with AD/HD professionals, book reviews, and links to other AD/HD-related sites; also FOCUS, the ADDA newsletter available for subscribers.National Resource Center on AD/HD
8181 Professional Place
Suite 150
Landover, MD 20785
Phone: (800) 233-4050
Web: http://www.help4adhd.org
Info: The National Resource Center on AD/HD, a Program of CHADD has been established with funding from the U.S. Centers for Disease Control and Prevention (CDC) to be a national clearinghouse of information and resources concerning Attention Deficit/Hyperactivity Disorder.
Autism
Access for Autistic Youth
American Cultural Exchange
200 W. Mercer Street, Suite 504
Seattle, WA 98119
Phone: (206) 217-9644
Fax: (206) 217-9643
Email: aay@cultural.org
Web: http://www.cultural.org/aay
Info: The Access for Autistic Youth Program serves as a conduit for services, information, and technical support for all Autistic Children and their families and caregivers regardless of their socio-economic status, race, or cultural background. This web site serves as the critical first step to different communities who have yet to fully understand or include Autism within their common language. By facilitating communication between parents and the communities they live and work in, the AAY program seeks to increase the tools of parents and caregivers to deal with and treat their autistic child. A special effort has been made to reach out to communities who are just beginning to tackle the difficult challenges of Autism by providing a link to all the information, resources and program and technical support available in a language they can understand. It is part of a concerted effort to improve access for all disabled children regardless of their language or economic background.Autism Coalition
181 Westchester Avenue
3rd Floor
Port Chester, NY 10573
Phone: (914) 935-1462
Web: http://www.autismcoalition.org
Info: The Autism Coalition works with national, state and local organizations that promote autism research, education and supportive services. The Coalition raises public awareness about autism and works to strengthen and accelerate biomedical and applied research to find the causes of autism to lead to a cure. We raise and dispense funds for private research and advocate for greater public investments in autism research and education.Autism Europe
Avenue E. Van Becelaere 26B, bte 21
B-1170 Brussels, BELGIUM
+32(0)2.675.75.05
Fax: +32(0)2.675.72.70
E-mail: president@autismeurope.org
Web: http://www.autismeurope.org
Info: An association whose main objective is to advance the rights of people with autism and their families and help improve their lives. Autism-Europe promotes research on the causes and treatment of autism and organises a major international Congress once every three years which constitutes the largest international event on autism,is a founding member of the Platform of European Social non-governmental organisations (NGOs) and has a seat on its Management Committee, and is also a founding member of the European Disability Forum which represents some 80 European NGOs of/for disabled people. Autism-Europe currently holds the Senior Vice-Presidency of EDF.
Autism Society of America (ASA)
7910 Woodmont Avenue, Suite 300
Bethesda, Maryland 20814-3067
Phone: (301) 657-0881
Toll-free: 1-800-3AUTISM
Fax: (301) 657-0869
E-mail: info@autism-society.org
Web: http://www.autism-society.org
Info: Organization promotes education, advocacy at state and federal levels, active public awareness and the promotion of research on autism. ASA's website lists current news and changes in legislation which affect people with autism; including an on-line resource guide, listed by state and information packages about diagnosis and treatment options.Cure Autism Now
5455 Wilshire Boulevard
Suite 715
Los Angeles, CA 90036 - 4234
Phone: (323) 549-0500
Toll-free: (888) 8-AUTISM
Fax: (323) 549-054
Web: http://www.cureautismnow.org
Info: Founded in 1995, the Cure Autism Now (CAN) Foundation is an organization of parents, clinicians and leading scientists committed to accelerating the pace of biomedical research in autism through research, education and outreach.
Cornelia de Lange Syndrome
CdLS USA
Cornelia de Lange Syndrome Foundation, Inc.
302 W. Main St. #100
Avon, CT 06001
Phone: (860) 676-8166
Toll-Free: (800) 223-8355
Fax: (860) 676-8337
E-mail: info@cdlsusa.org
Web: http://www.cdlsusa.org/
Info: The Cornelia de Lange Syndrome Foundation is a family support organization which exists to ensure the early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lifetime.
Developmental Disabilities
The International Association for the Scientific Study of Intellectual Disabilities (IASSID)
Association de Villepinte
28 Rue de L'Eglise
93420 Villepinte
France
Phone: +33 1 43851206
Fax: +33 1 49361154
E-mail: njross@compuserve.com (Dr. Neil Ross, president)
Web: http://www.iassid.org
Info: International and interdisciplinary scientific non governmental organization with official relations with the World Health Organization. It promotes worldwide research and exchange of information on intellectual disabilities. Activities: holding a quadriennial international Congress, being involved with international activities within the United Nations and
the World Health Organization, recognizing the outstanding contributions of key scientists through awards, promoting scientific publications, advocacy and policy development in research and services, and maintaining an international network of scientists and others concerned with the study of intellectual disabilities.J. P. Das Developmental Disabilities Centre
6-123 Education North
University of Alberta
Edmonton AB T6G 2G5
Canada
Phone: (780) 492-4505
Fax: (780) 492-1318
Web: http://www.quasar.ualberta.ca/ddc/
Info: University of Alberta (Canada) research center for the study of Mental Retardation. Its current activities include:
research, student training, publication, and selected clinical services for children and adults with mental retardation and other disorders that affect learning and originate in the childhood. Organization focuses on abuse/neglect and violence prevention, inclusive education, and family and professional supports.National Center for Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention
4770 Buford Highway NE
Mailstop F-15
Atlanta, Georgia 30341-3724
Phone: 770/488-7400
Fax: 770/488-7361
Web: http://www.cdc.gov/ncbddd/dd
Info: Government sponsored, useful site for information on child development, developmental disabilities, mental retardation, cerebral palsy, autism, hearing impairment, vision impairment, ADHD. Various fact-sheets and Center publications listed on-line. English and Spanish.
Down Syndrome
Center for Motor Behavior in Down Syndrome
University of Michigan
Division of Kinesiology
401 Washtenaw Ave
Ann Arbor, MI 48109-2214
Phone: (734) 936-2607
Fax: (734) 936-1925
E-mail: cmbds@umich.edu
Web: http://www.umich.edu/~cmbds
Info: Current research and research reviews about motor development of children with down Syndrome, as well as interactions of biological and psychological factors that contribute to the overall quality of the individual's motor behavior.National Down Syndrome Congress (NDSC)
1370 Center Drive, Suite 102
Atlanta, GA 30338
Phone: (770) 604-9500
Toll-free: 1-800-232-NDSC
Fax: (770) 604-9898
E-mail: info@ndsccenter.org
Web: http://www.ndsccenter.org
Info: Non-profit organization which provides information, support and a national network of affiliated local groups - all related to Down syndrome. Contact for New Parent Package (also available on-line, ready to download),
resource information as well as list of available audiotapes from NDSC annual conventions. On-line 'health Watch': list of medical concerns which are likely to surface in a life of person with DS, and 'Newsline' newsletter. 'Down Syndrome News' (printed) for members.National Down Syndrome Society
666 Broadway
New York, NY 10012
Phone: (212) 460-9330
Toll-Free: (800) 221-4602
Fax: (212) 979-2873
Web: http://www.ndss.org
Info: National organization whose mission is to increase public awareness about Down syndrome and discover its underlying causes through research, education and advocacy. News, events, publications, information and referral and other resources for the Down Syndrome community.Team Up For Down Syndrome
1100 Irvine Blvd. Suite 35
Tustin, CA 92780
Phone: (714) 338-7383
Fax: (714) 573-4949
Web: http://www.teamupfordownsyndrome.org/
Info: Organization dedicated to raise the public's awareness of the positive contributions that individuals with Down syndrome make in our society. They organize gala events, black tie dinner and concerts, and donate proceeds from those events for benefit of housing, health, education, job training, family counseling and other worthwhile causes.
Fetal Alcohol Syndrome
Family Empowerment Network (FEN)
University of WI Medical School
Department of Family Medicine
777 S. Mills Street
Madison, WI 53715
Phone: (800) 462-5254 / (608) 262-6590
Fax: (608) 263-5813
E-mail: fen@fammed.wisc.edu
Web: http://www.fammed.wisc.edu/fen/
Info: FEN (The Family Empowerment Network) is a national resource, referral, support and research program serving families affected by Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects a (FAE) and the providers who work with them.National Organizations on Fetal Alcohol Syndrome (NOFAS)
216 G Street, North East
Washington, DC 20002
Phone: (202) 785-4585
Fax: (202) 466-6456
Email: information@nofas.org
Web: http://www.nofas.org/
Info: NOFAS is a nonprofit organization founded in 1990 dedicated to eliminating birth defects caused by alcohol consumption during pregnancy and improving the quality of life for those individuals and families affected. NOFAS, the only national organization focusing solely on FAS, takes a multicultural approach to prevention and healing.
Fragile X Syndrome
National Fragile X Foundation
PO Box 190488
San Francisco, CA 94119
Phone: (925) 938-9300
Toll-Free: (800) 688-8765
Fax: (925) 938-9315
E-mail: natlfx@fragilex.org
Web: http://www.fragilex.org
Info: The National Fragile X Foundation unites the fragile X community to enrich lives through educational and emotional support, promote public and professional awareness, and advance research toward improved treatments and a cure for fragile X syndrome.
Hydrocephalus Association
870 Market St.
Suite 705
San Francisco, CA 94102
Phone: (415) 732-7040
Toll-free: (888) 598-3789
Fax: (415) 732-7044
E-mail: info@hydroassoc.org
Web: http://www.hydroassoc.org
Info: Services and resources to members and non-members alike: information packets, physician referral, and directory of support groups for families affected by hydrocephalus. Also personal, one-to-one support. Quarterly newsletter for members.National Hydrocephalus Foundation
12413 Centralia Rd.
Lakewood, CA 90715-1653
Phone: (562) 924-6666
Phone: (562) 402-3523
Toll-Free: (888) 857-3434
Fax: (562) 924-6666
E-Mail: hydrobrat@earthlink.net
Web: http://www.nhfonline.org
Info: The objectives of NHF are: To assemble and disseminate information pertaining to hydrocephalus, its treatments and outcomes; to establish and facilitate a communication network among affected families and individuals; to help others gain a deeper understanding of those areas affected by hydrocephalus, such as education, insurance, tax and estate planning, employment and family; to increase public awareness and knowledge of hydrocephalus; to promote and support research on the causes, treatment and prevention of hydrocephalus. In addition to providing the public with informational brochures, NHF offers a variety of help guides, maintains a reference library, videos/CD's on hydrocephalus, has support groups, will assist others in starting an NHF support group in their area, and publishes a quarterly newsletter, Life~Line.
Prader-Willi Syndrome
Prader-Willi Syndrome Association (USA)
5700 Midnight Pass Rd.
Sarasota, Florida 34242 USA
Phone: (941) 312-0400
Toll-free: (800) 926-4797
Fax: (941) 312-0142
E-mail: national@pwsusa.org
Web: http://www.pwsausa.org/contactus/contact.htm
Info: Prader-Willi Syndrome Association (USA) is dedicated to serving individuals affected by Prader-Willi Syndrome (PWS), their families, and interested professionals. To provide information, education, and support services to its members, PWSA offers: a toll-free telephone number for information and referrals, a bimonthly newsletter, publications and audiovisual presentations, an annual national conference for families and professionals, a nationwide network of local chapters, parents, and professionals, research funding to expand knowledge and treatment options, and representation on the international level.
Rett Sydrome
International Rett Syndrome Association (IRSA)
9121 Piscataway Road
Clinton, MD 20735
Phone: (800) 818-RETT
Fax: (301) 856-3336
E-mail: irsa@rettsyndrome.org
Web: http://www.rettsyndrome.org
Info: IRSA is an international organization dedicated to disseminating information, lobbying for better services, and providing books, materials and events designed to raise awareness about Rett Syndrome.
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This page last updated: Sunday, November 25, 2007