Fletcher Allen, a Vermont university hospital and medical center, serves all of
Vermont and the northern New York region. Located in Burlington, Fletcher Allen is a regional, academic healthcare center and teaching hospital in alliance with the University of Vermont.
Parents of Disabled / Ill Children
Self Help Clearinghouse
|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.
Birth Defect Research for Children
976 Lake Baldwin Lane Ste. 104
Orlando, FL 32814
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.
1400 Parkmoor Ave., Suite 100
San Jose, CA 95126
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.
150 Custer Court
Green Bay, WI 54301
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.
16120 N.E. Eighth St.
Bellevue, WA 98008-2859
Voice: Greg Schell 425-653-4286
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.
P.O. Box 310
Moyie Springs, ID 83845
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.
6316 S. 12th
Tacoma, WA 98465
Voice: 1-800-572-7368 (voice/TTY) or 253-565-2266 (voice/TTY)
TDD: 1-800-572-7368 (voice/TTY) or 253-565-2266 (voice/TTY)
(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).
3701 San Mateo Blvd. NE, Ste 103
Albuquerque, NM 87110
Voice: 1-888-835-5669 or 505-872-4774 (Mon.-Fri., 9am-5pm MST)
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.
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).
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.
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
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