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Heart Disease

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.

Mended 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
8150 North Central Expressway, M2075
Dallas, TX 75206
Voice: 1-888-432-7899 or 214-296-9252
Fax: 214-296-9252
Website: http://www.mendedhearts.org
E-mail: info@mendedhearts.org
Verified: 7/2/2012

National 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:
Nat'l 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: 8/15/2012

Society 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. E-publishes 'Survival Guide.' Offers guidelines to start similar groups.
Write:
Soc. 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: 7/31/2012

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 (voice/fax) (Mon.-Fri., 8am-3pm CST)
Fax: 920-498-0058
Website: http://www.kidswithheart.org
E-mail: michelle@kidswithheart.org
Verified: 7/24/2012

SADS Foundation

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.
Write:
SADS Foundation
508 E. South Temple, Ste. 20
Salt Lake City, UT 84102
Voice: 1-800-786-7723 or 801-531-0937
Fax: 801-531-0945
Website: http://www.stopsads.org
E-mail: sads@sads.org
Verified: 8/14/2012

Pacemaker 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 and encouragement in a fun and interactive environment. Also provides information on local groups.
Website: http://www.pacemakerclub.com
Verified: 6/29/2012

Children'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
Verified: 6/29/2012

Congenital 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: 6/29/2012

Arrhythmia Alliance (The Heart Rhythm Charity)

International network. 50 chapters. Founded 2004. A coalition of charities, patient groups, patients, caregivers, medical professionals and allied professionals, working independently, but under the A-A umbrella to promote the timely and effective diagnosis and treatment of arrhythmias.
Write:
Arrhythmia Alliance
P.O. Box 3697, Stratford upon Avon
Warwickshire, UK CV37 8YL
Voice: +44 (0) 17890450787
Website: http://www.heartrhythmcharity.org.uk
E-mail: info@heartrhythmcharity.org.uk
Verified: 7/31/2012

Little 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.
Write:
Little Hearts, Inc.
P.O. Box 171
110 Court St. Ste. 2
Cromwell, CT 06416
Voice: 1-866-435-4673
Fax: 860-635-0006
Website: http://www.littlehearts.org
E-mail: info@littlehearts.org
Verified: 7/26/2012

It's My Heart

(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.
Write:
It's My Heart
1775 St. James Place, Suite 130
Houston, TX 77056
Voice: 1-888-432-7807; Spanish: 1-877-586-6888
Fax: 1-866-222-0334
Website: http://www.itsmyheart.org
E-mail: info@itsmyheart.org
Verified: 7/2/2012

Sudden 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.
Write:
SCAA
1250 Connecticut Ave., NW, #800
Washington, DC 20036
Website: http://www.suddencardiacarrest.org (click 'Online Community' link on bottom left corner of Home page)
Verified: 7/11/2012

WomenHeart

Online. Support for women with heart disease, their family and friends.
Write:
WomenHeart - NCWHD
818 18th St. NW, Ste 1000
Washington, DC 20006
Website: http://www.womenheart.org/supportnetworks
E-mail: mail@womenheart.org
Verified: 6/29/2012

Long QT Online Support Group

Online. Support for people who are suffering from Long QT (a form of Cardiac Arrhythmia.) Group is open to friends and family.
Website: http://health.groups.yahoo.com/longqt
E-mail: longqt-owner@yahoogroups.com
Verified: 8/9/2012

The Hypertropic CardioMyopathy Association

Online. Offers support for those with hypertropic cardio-mypathy (a condition where the heart muscle become thick).
Write:
Hypertropic CardioMyopathy Assoc.
328 Green Pond Rd., PO Box 306
Hibernia, NJ 07842
Voice: 973-983-7429
Fax: 973-983-7870
Website: http://www4hcm.org or online support forum http://www.4hcm.org/forums/forum.php
Verified: 7/31/2012

ASD Online Support Group

Online. Provides mutual support for people living with atrial septal defect, a congenital heart disease.
Website: http://www.asdsurvivors.org
Verified: 8/15/2012

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