Self Help Clearinghouse
Heart Disease
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. Kids With Heart
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.
Write:
Kids With Heart NACHD, Inc.
1578 Careful Dr.
Green Bay, WI 54304
Voice: 1-800-538-5390 or 920-498-0058
Fax: 920-498-0058
Website: http://www.kidswithheart.org
E-mail: michelle@kidswithheart.org
Verified: 9/25/2008Mended Hearts
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.
Write:
Mended Hearts
7272 Greenville Ave.
Dallas, TX 75231
Voice: 1-888-432-7899 or 214-360-6149
Fax: 214-360-6145
Website: http://www.mendedhearts.org
E-mail: info@mendedhearts.org
Verified: 9/25/2008National Society for MVP and Dysautonomia
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.
Write:
National Society MVP and Dysautonomia
880 Montclair Rd., Suite 370
Birmingham, AL 35213
Voice: 205-592-5765 or 1-800-541-8602
Fax: 205-592-5707
Website: http://www.mvprolapse.com
E-mail: staff@MVProlapse.com
Verified: 10/21/2008Society for Mitral Valve Prolapse Syndrome
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. Publishes 'Survival Guide.' Offers guidelines to start similar groups.
Write:
Society for MVP Syndrome
P.O. Box 431
Itasca, IL 60143-0431
Voice: 630-250-9327
Fax: 630-773-0478
Website: http://www.mitralvalveprolapse.com
E-mail: bonnie0107@aol.com
Verified: 9/25/2008Adult Congenital Heart Association
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.
Write:
Adult Congenital Heart Association
6757 Greene St., Suite 335
Philadelphia, PA 19119
Voice: 1-888-921-2242 or 215-849-1260
Fax: 245-849-1261
Website: http://www.achaheart.org
E-mail: info@achaheart.org
Verified: 9/25/2008Congenital Heart Anomalies-Support, Education, Resources (CHASER)
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. Newsletter, phone support, information and referral. Heart surgeons and facilities directory.
Write:
CHASER
2112 N. Wilkins Rd.
Swanton, OH 43558
Voice: 419-825-5575
Verified: 10/11/2008SADS Foundation
International. 5 affiliated groups. Founded 1992. International organization working 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.
Write:
SADS Foundation
508 E. South Temple, Suite 20
Salt Lake City, UT 84102
Voice: 1-800-786-7723 or 801-531-0937
Fax: 801-531-0945
Website: http://www.sads.org
E-mail: sads@sads.org
Verified: 9/25/2008SVT (Supra Ventricular Tachycardia) Support
Online. Founded 2002. E-mail list support. Mutual aid support from and for persons with supra ventricular tachycardia or any type arrhythmia. Newsletter.
Website: http://groups.yahoo.com/group/SVTSupport/
Verified: 9/23/2008Pacemaker Club
Online. Founded 2000. Regular exchange of messages, listserv and newsgroup. Chat meetings. E-mail pen pal program to support new members. Offers support information, encouragement in a fun and interactive environment. Also information on local groups.
Website: http://www.pacemakerclub.com
E-mail: info@pacemakerclub.com
Verified: 10/17/2008Children's Cardiomyopathy Foundation
Online. Provides support and information on pediatric cardiomyopathy. Offers website discussion forum and biannual newsletter. Working on plans to start community support groups.
Website: http://www.childrenscardiomyopathy.org
E-mail: info@childrenscardiomyopathy.org
Verified: 10/15/2008Congenital Heart Information Network
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.
Website: http://www.tchin.org
Verified: 10/16/2008Arrhythmia Alliance (The Heart Rhythm Charity)
International network. Founded 2004. A network of sufferers, medical professionals, various UK based charities and related industry promoting better understanding, diagnosis, treatment and quality of life for individuals with cardiac arrhythmias.
Write:
Arrhythmia Alliance
P.O. Box 3697, Stratford upon Avon
Warwickshire, UK CV37 8YL
Voice: +44(0)17890450787
Fax: +44(0)17890450682
Website: http://www.heartrhythmcharity.org.uk
E-mail: info@arrhythmiaalliance.org.uk
Verified: 9/22/2008Little Hearts, Inc.
National. Provides support, resources, networking and hope to families affected by congenital heart defects. Provides newsletter, literature, phone support, annual picnic and advocacy.
Voice: 1-866-435-4673
Fax: 860-635-0006
Website: http://www.littlehearts.org
E-mail: info@littlehearts.org
Verified: 9/25/2008It's My Heart
National. 15 groups. Founded 2005. Mutual-aid support provided via family matching program (matches families with others that have a similiar CHD 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.
Write:
It's My Heart
19728 Saums Rd., PMB #137
Houston, TX 77084
Voice: 1-888-432-7807
Fax: 866-222-0334
Website: http://www.itsmyheart.org
E-mail: info@itsmyheart.org
Verified: 9/25/2008Sudden Cardiac Arrest Association Online Community
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.
Website: http://www.suddencardiacarrest.org (click 'Online Community' link on bottom left corner of Home page)
Verified: 8/22/2008
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
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