Children's Health

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Parents of Disabled / Ill 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
800 Celebration Ave., Suite 225
Celebration, FL 34747
Voice: 407-566-8304
Fax: 407-566-8341
Website: http://www.birthdefects.org
E-mail: staff@birthdefects.org
Verified: 12/7/2009

(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:
Parents Helping Parents
1400 Parkmoor Ave., Suite 100
San Jose, CA 95126
Voice: 408-727-5775
Fax: 408-286-1116
Website: http://www.php.com
E-mail: info@php.com
Verified: 12/7/2009

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. Newsletter $15 (parents); $25 (professionals). Matching services $5. Various literature available.
Write:
MUMS
150 Custer Court
Green Bay, WI 54301
Voice: 1-877-336-5333 (parents only) or 920-336-5333 (day)
Fax: 920-339-0995
Website: http://www.netnet/mums
E-mail: mums@netnet.net
Verified: 12/15/2009

Model. 15 groups in Washington. Founded 1986. Provides mutual support and resources for fathers and families raising children with special needs and developmental disabilities. Print newsletters, e-newsletter, web page with extensive links, photo album of men and children, articles by dads and materials for providers regarding family-centered, culturally competent care. Videos and monographs available. Statewide and regional conferences.
Write:
WSFN
16120 N.E. Eighth St.
Bellevue, WA 98008-2859
Voice: 425-747-4004
Fax: 425-474-1069
Website: http://www.fathersnetwork.org
E-mail: greg.schell@kindering.org
Verified: 12/7/2009

National network. Founded 1990. Christian, non-profit organization encouraging families with special needs, particularly those who home educate. Bi-annual magazine, lending library, family phone book, phone support, program for parents of special need pre-borns, information and referrals. Dues $25/yr.
Write:
NATHHAN
P.O. Box 310
Moyie Springs, ID 83845
Voice: 208-267-6246
Website: http://www.nathhan.com
E-mail: nathanews@aol.com
Verified: 10/14/2010

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, lending library of 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 or 253-565-2266 (voice/TTY)
Fax: 253-566-8052
Website: http://www.wapave.org
E-mail: wapave9@washingtonpave.com
Verified: 12/16/2009

(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
2340 Alamo SE, Suite 102
Albuquerque, NM 87106
Voice: 1-888-835-5669 or 505-872-4774 (Mon.-Fri., 8am-5pm MST)
Fax: 505-872-4780
Website: http://www.familyvoices.org
Verified: 12/16/2009

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. Dues $15/yr. Newsletter, referral network and training packets. Assistance in starting local groups.
Website: http://mothersfromhell2.com
Verified: 10/13/2010

Online. Founded 1997. Offers support for parents of premature babies that are age 4+ years old for any of their special needs, e.g. mental, physical, emotional or learning disability. Provides support, discussion listserv, prematurity forums, advocacy and educational links. Special children's show-and-tell section.
Website: http://www.prematurity.org
Verified: 9/24/2010

National. 200 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 training and technical assistance regarding Sibshops and workshops for school-age siblings.
Voice: 206-297-6368
Website: http://www.siblingsupport.org
E-mail: donmeyer@siblingsupport.org
Verified: 9/14/2010

Online. Offers a large variety of message boards which deal with parenting issues including infertility, pregnancy, parenting challenges, parents of disabled, pregnancy loss, newborn babies, toddlers, adoption, family issues, etc.
Website: http://www.ivillage.com/messageboards
Verified: 5/3/2010

Online. 1157 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
Verified: 9/24/2010

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: 1/, 011

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.