National. 285 chapters. Founded 1951. Mutual support for persons who have heart disease, their families, friends and other interested persons. Quarterly magazine and chapter development kit.
8150 N. Central Expressway
Dallas, TX 75206
Voice: 1-888-432-7899 or 214-296-9252
National. 54 affiliated groups. Founded 1987. Assists individuals suffering from mitral valve prolapse syndrome and dysautonomia to find support and understanding. Education on symptoms and treatment. Newsletter and literature.
National Society MVP and Dysautonomia
880 Montclair Rd., Suite 370
Birmingham, AL 35213
Voice: 205-592-5765 or 1-800-541-8602
International. 23 affiliated groups. Founded 1991. Provides support and education to patients, families and friends about mitral valve prolapse syndrome. Newsletter, phone support, literature, conferences and support group meetings. E-publishes 'Survival Guide.' Offers guidelines to start similar groups.
Society for MVP Syndrome
P.O. Box 431
Itasca, IL 60143-0431
National. 3 affiliated groups. Founded 1985. Mutual support for families and adults affected by congenital or acquired heart defects. Also provides bereavement services. Matches parents together for support, referrals to local support groups nationwide. Promotes public awareness of congenital heart defects. Books, awareness products, advocacy assistance and assistance in starting groups.
Kids With Heart NACHD, Inc.
1578 Careful Dr.
Green Bay, WI 54304
Voice: 1-800-538-5390 or 920-498-0058 (voice/fax) (Mon.-Fri., 8am-3pm CST)
National network. Founded 1992. Opportunity for parents of children born with heart defects to network with other parents with similar needs and concerns. Education on hospitalization, surgeries, medical treatments, etc. Phone support, information and referral. Heart surgeons and facilities directory.
2112 N. Wilkins Rd.
Swanton, OH 43558
Voice: Jim and Anita Myers 419-825-5575 (day)
National. Founded 1998. Seeks to improve the quality of life and extend the lives of adults with congenital heart defects. Education, outreach, advocacy and promotion of research. Online support, quarterly newsletter and national conferences.
Adult Congenital Heart Association
6757 Greene St. Ste. 335
Philadelphia, PA 19119
International. 5 affiliated groups. Founded 1992. Works to save the lives of young persons who are predisposed to sudden death due to cardiac arrhythmia. Offers networking, newsletter, literature, advocacy, information, phone support and referrals.
508 E. South Temple, Ste. 20
Salt Lake City, UT 84102
Online. Founded 2000. Regular exchange of messages, listserv and newsgroup. Chat meetings. E-mail pen pal program to support new members. Offers support, information and encouragement in a fun and interactive environment. Also provides information on local groups.
Online. Provides support and information on pediatric cardiomyopathy. Offers website discussion forum and biannual newsletter. Working on plans to start community support groups.
Online. Offers support, information and resources to families of children with congenital heart defects, acquired heart disease and adults with congenital heart defects. Also open to interested professionals.
International network. 50 chapters. Founded 2004. A network of sufferers, medical professionals, various UK based charities and related industriespromoting better understanding, diagnosis, treatment and quality of life for individuals with cardiac arrhythmias.
P.O. Box 3697, Stratford upon Avon
Warwickshire, UK CV37 8YL
National. Provides support, resources, networking and hope to families affected by congenital heart defects. Provides newsletter, literature, phone support, annual picnic and advocacy.
P.O. Box 171
110 Court St. Ste. 3A
Cromwell, CT 06416
(BILINGUAL) National. 15 groups. Founded 2005. Mutual support through family matching program (matches families with others that have a similar congenital heart defect diagnosis or by proximity), moderated online message board and listserv. Provides support, education and advocacy for those affected by congenital heart defects by creating alliances with fellow families, hospitals, support groups and the community. Newsletter, online support group and assistance in starting local support groups available.
It's My Heart
1775 St. James Place, Suite 130
Houston, TX 77056
Voice: 1-888-432-7807; Spanish: 1-877-586-6888
Online. Support community connecting those who have suffered sudden cardiac arrest, have an implantable defibrillator, are family or caregivers of someone who suffered a cardiac arrest and all who want to interact with others interested in reducing sudden cardiac arrest.
1250 Connecticut Ave., NW, #800
Washington, DC 20036
Website: http://www.suddencardiacarrest.org (click 'Online Community' link on bottom left corner of Home page)
Online. Support for women with heart disease, their family and friends.
WomenHeart - NCWHD
818 18th St. NW, Ste 1000
Washington, DC 20006
Online. Support for people who are suffering from Long QT (a form of Cardiac Arrhythmia.) Group is open to friends and family.
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.
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