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.
Birth Defect Research for Children
National network. Founded 1982. Links parents of children with similar birth defects for mutual sharing and support. Provides information about birth defects, as well as services and resources that may be helpful to families. Sponsors the National Birth Defect Registry. Maintains database on medical/scientific literature and research. Monthly electronic newsletter. Write: Birth Defect Research for Children 976 Lake Baldwin Lane Ste. 104 Orlando, FL 32814 Voice: 407-895-0802 Website: http://www.birthdefects.org E-mail: email@example.com Verified: 8/9/2012
Parents Helping Parents
(MULTILINGUAL) Model. 22 groups. Founded 1976. Parent-directed family resource center serving children with special needs (due to illness, accident, conditions of birth, learning differences or family stress), their families and the professionals who serve them. Information and referral, specialty programs, family support groups, peer counseling, training and library. Newsletter, group development guidelines and national resource directory online. Outreach in Spanish, Japanese and Vietnamese. Write: PHP 1400 Parkmoor Ave., Suite 100 San Jose, CA 95126 Voice: 408-727-5775 Fax: 408-286-1116 Website: http://www.php.com E-mail: firstname.lastname@example.org Verified: 7/24/2012
MUMS National Parent-to-Parent Network
National. 36 affiliated groups. Founded 1979. Mutual support and networking for parents or care providers of children with any disability, rare disorder, chromosomal abnormality or health condition using a database of over 23,000 families from 54 countries, covering 3500 disorders, very rare syndromes or undiagnosed conditions. Provides referrals to support groups and assistance in starting groups. $25 (professionals). Matching services $10. Various literature available. Write: MUMS 150 Custer Court Green Bay, WI 54301 Voice: 1-877-336-5333 Fax: 920-339-0995 Website: http://www.netnet.net/mums Verified: 8/17/2012
Washington State Fathers Network
Model. 15 groups in Washington. Founded 1986. Provides mutual support and resources for fathers and families raising children with special needs and developmental disabilities. Web page with extensive links, articles by dads and materials for providers regarding family-centered, culturally competent care. E-newsletters, videos and monographs available. Statewide and regional conferences. Write: WSFN 16120 N.E. Eighth St. Bellevue, WA 98008-2859 Voice: Greg Schell 425-653-4286 Fax: 425-474-1069 Website: http://www.fathersnetwork.org E-mail: email@example.com Verified: 8/9/2012
NATHHAN (Nat'l Challenged Homeschoolers)
National network. Founded 1990. Christian, non-profit organization encouraging families with special needs, particularly those who home educate. Bi-annual magazine, family phone book, phone support, program for parents of special need pre-borns, information and referrals. Donations accepted. Write: NATHHAN P.O. Box 310 Moyie Springs, ID 83845 Voice: 208-267-6246 Website: http://www.nathhan.com E-mail: firstname.lastname@example.org Verified: 8/14/2012
PAVE (Partnership for Action, Voices for Empowerment)
Model. 1 group in Washington. Founded 1979. Parent-directed organization to increase independence, empowerment and opportunities for special needs children and their families through training, information, referrals and support. Newsletter, resources, networking between parents through internet, workshops on many issues, phone support and conferences on special education issues. Has special program that focuses on military family concerns. Write: PAVE 6316 S. 12th Tacoma, WA 98465 Voice: 1-800-572-7368 (voice/TTY) or 253-565-2266 (voice/TTY) Fax: 253-566-8052 TDD: 1-800-572-7368 (voice/TTY) or 253-565-2266 (voice/TTY) Website: http://www.wapave.org E-mail: email@example.com Verified: 7/2/2012
(BILINGUAL) National. 50 affiliated groups. Founded 1995. Grassroots organization that speaks on behalf of children with special healthcare needs at the national, state and local levels. Encourages and supports families who want to play a role in their child's healthcare. Advocacy. Literature (Spanish and English). Write: Family Voices 3701 San Mateo Blvd. NE, Ste 103 Albuquerque, NM 87110 Voice: 1-888-835-5669 or 505-872-4774 (Mon.-Fri., 9am-5pm MST) Fax: 505-872-4780 Website: http://www.familyvoices.org Verified: 4/3/2012
Mothers From Hell 2
Online. National network. Founded 1992. Support and advocacy for families of children with any type of disability. Mission is to improve the quality of the lives and education of persons with developmental and other disabilities. Seeks to promote understanding and acceptance of people with disabilities. Newsletter, referral network and training packets. Assistance in starting local groups. Website: http://mothersfromhell2.com Verified: 6/29/2012
Sibling Support Project
National. 340 affiliated groups. Founded 1990. Organization dedicated to the life-long concerns of brothers and sisters of people with special health, developmental and mental health concerns. Provides workshops on sibling issues, hosts listservs and provides training on how to implement Sibshops (lively workshops for school-age siblings). Voice: 206-297-6368 Website: http://www.siblingsupport.org E-mail: firstname.lastname@example.org Verified: 8/14/2012
Online. 1500+ members. Founded 1998. Listserv for and about adult brothers and sisters of people with special health, developmental and emotional needs. Opportunity for adult brothers and sisters to share information and discuss issues of common interest. Subscribers can connect with their peers, seek information about local services, create connections for their siblings and discuss the proper policies agencies should have toward brothers and sisters. Website: http://groups.yahoo.com/group/sibnet E-mail: email@example.com Verified: 7/2/2012
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: firstname.lastname@example.org
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