Children's Health

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Mental Retardation / Down Syndrome

National. 160 affiliated groups. Founded 1983. Works to empower families of persons with mental retardation through information and advocacy. Weekly e-mail updates and quarterly newsletter for members. Networking, information and referrals, advocacy, phone support and conferences. Annual dues $25.
Write:
VOR
836 S. Arlington Heights Rd., #351
Arlington Heights, IL 60007
Voice: 1-877-399-4867
Fax: 847-253-0675
Website: http://www.vor.net
E-mail: tamie327@hotmail.com
Verified: 12/15/2009

National. 150+ parent group networks. Founded 1974. Support, information and advocacy for families affected by Down syndrome. Promotes research and public awareness. Serves as clearinghouse and network for parent groups. Newsletter ($25/yr). Annual convention, phone support and chapter development guidelines.
Write:
National Down Syndrome Congress
1370 Center Dr., Suite 102
Atlanta, GA 30338
Voice: 1-800-232-6372 or 770-604-9500 (Mon.-Fri., 9am-5:30pm EST)
Fax: 770-604-9898
Website: http://www.ndsccenter.org
E-mail: info@ndsccenter.org
Verified: 12/15/2009

Model. 13 groups. Founded 1982. Self-help advocacy for people with developmental disabilities. Monthly chapter meetings. Members help each other resolve problems, gain self-confidence and learn leadership skills. Chapter development guidelines and newsletter.
Write:
Speaking for Ourselves
100 W. Main St., Suite 510
Lansdale, PA 19446
Voice: 1-800-867-3330 or 215-923-8600
Fax: 215-923-8601
Website: http://www.speaking.org
E-mail: info@speaking.org
Verified: 12/15/2009

National. 1100 chapters. Founded 1950. Provides support for people with intellectual and developmental disabilities and their families. Advocacy groups and direct services. Quarterly newspaper. Chapter development guidelines. Local group information on website.
Write:
The Arc
1010 Wayne Ave.
Silver Spring, MD 20910
Voice: 301-565-3842
Fax: 301-565-3843
Website: http://www.thearc.org
E-mail: info@thearc.org
Verified: 12/11/2009

Model. 33 groups in Washington. 7 high school clubs. Founded 1977. Self-help advocacy organization created by and for people with developmental disabilities. Provides help in starting new chapters. Quarterly newsletter.
Write:
People First of Washington
P.O. Box 648
Clarkston, WA 99403-2079
Voice: 509-758-1123
Fax: 509-758-1289
E-mail: pfow@clarkston.com
Verified: 12/8/2009

Online. 1300 members. Founded 1997. Opportunity for families and professionals to discuss the unique aspects of supporting a person who is dually diagnosed with Down syndrome and autism, autism-spectrum disorder, or pervasive developmental disorder.
Website: http://groups.yahoo.com/group/ds-autism
Verified: 10/7/2010

Online. 650+ members. Founded 2001. Mutual support and sharing of ideas for parents who are, or who would like to, home school their child with Down Syndrome.
Website: http://health.groups.yahoo.com/group/homeschoolinganddownsyndrome
Verified: 10/7/2010

Online. 975 members. Founded 1995. Supportive group for families of persons with Down syndrome. Focus is on the families; not just the person with Down Syndrome.
Website: http://health.groups.yahoo.com/group/upsndowns
Verified: 10/7/2010

Online. 750+ members. Founded 1999. Support for families with children diagnosed with mosaic Down syndrome (MDS). Open to adults with MDS, and professionals working with them. Newsletter, pen pals, yearly conference.
Voice: 1-888--
Website: http://health.groups.yahoo.com/group/mosaicds
Verified: 10/12/2010

The above information was "verified" as correct on the date at the end of each entry. Since American Self-Help Group Clearinghouse's database is extensive but staffing is limited and information for these organizations can change, it is not possible to keep every entry in American Self-Help Group Clearinghouse database completely current and accurate. Please check with the organizations listed for the most current information.

For additional information on self-help groups, please visit the American Self-Help Group Clearinghouse web site at http://www.mentalhelp.net/selfhelp

If you find information that is not current, please contact American Self-Help Group Clearinghouse at: admin@selfhelpgroups.org

WebMD Medical Reference from the American Self-Help Clearinghouse

Last Updated: May 11, 2011

This information is provided as a resource and does not constitute an endorsement for any group. It is the responsibility of the reader to decide whether a group is appropriate for his/her needs. For evidence-based information on diseases, conditions, symptoms, treatment and wellness issues, continue searching this site.This information is not intended to replace the advice of a doctor. Healthwise disclaims any liability for the decisions you make based on this information.