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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 N. Central Expressway
M2248
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: 3/12/2014

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)
Fax: 920-498-0058 (voice/fax)
Website: http://www.kidswithheart.org
E-Mail: michelle@kidswithheart.org
Verified: 2/19/2014

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:
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: 3/12/2014

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: 2/19/2014

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, online and 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 or http://www.inspire.com/groups/sads-foundation
E-Mail: sads@sads.org
Verified: 2/19/2014

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: 3/5/2014

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
Fax: 1-866-222-0334
Website: http://www.itsmyheart.org
E-Mail: info@itsmyheart.org
Verified: 3/12/2014

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
E-Mail: mail@womenheart.org
Verified: 3/12/2014

The Hypertropic CardioMyopathy Association

Online. Offers support for those with hypertropic cardiomypathy (a genetic condition where the heart muscle become thick).
Write:
Hypertropic CardioMyopathy Assoc.
322 Green Pond Rd., PO Box 306
Hibernia, NJ 07842
Voice: 973-983-7429
Website: http://www4hcm.org or online support forum http://www.4hcm.org/forums/forum.php
Verified: 3/5/2014

Children's Cardiomyopathy Foundation

National. Supports families affected by all forms of pediatric cardiomyopathy through research, public awareness and advocacy, family support services and education. Family support services include a private listserv, support groups and phone calls to support members and help them connect with healthcare professionals as well as families in similar situations. CCF's Family Assistance Program helps qualifying families in need of financial assistance with cardiomyopathy-related expenses. Additionally, an extensive collection of educational material is available.
Voice: 1-866-808-2873
Website: http://www.childrenscardiomyopathy.org
E-Mail: info@childrenscardiomyopathy.org
Verified: 2/19/2014

Pacemaker Club

Online. Founded 2000. Support community that helps pacemaker and implantable cardioverter defibrillator (ICD) recipients meet, share information and support each other.
Write:
Pacemaker Club Inc.
PO Box 471 Station A
Fredericton Canada, NB E3B 4Z9
Website: http://www.pacemakerclub.com Facebook: http://www.facebook.com/pacemakerclub
E-Mail: info@pacemakerclub.com
Verified: 12/31/2013

Wired4Life

Online. Community provides support, education, friendship and a sharing safe-haven for women with implanted cardiac devices. Groups (including five private/secret groups on Facebook), newsletter (6x per yr.) which includes implanted device education, Heart Smarts column written by a cardiac nurse/wired sister, member stories and more.
Website: http://wired4life.net
E-Mail: dawnhuberty@wired4life.net
Verified: 3/12/2014

Syncope Trust And Reflex Anoxic Seizures (STARS-US)

National. Founded 2006. Provides support, information and networking for individuals, families and individuals on syncope conditions. Information and support also offered via Facebook and Health Unlocked message board.
Write:
STARS-US
PO Box 5507
Hilton Head Island, SC 29938
Voice: 843-785-4101
Website: http://www.stars-us.org
E-Mail: info@stars-us.org
Verified: 2/19/2014

Sudden Cardiac Arrest Association

Online. Founded 2005. Support for persons who have suffered sudden cardiac arrest, have an implantable defibrillator, provide emergency or medical treatment related to cardiac arrest, are family or caregivers of someone who suffered a cardiac arrest, or are interested in reducing sudden cardiac arrests.
Write:
SCAA
12100 Sunset Hills Rd. #130
Reston, VA 20190
Website: http://suddencardiacarrest.org Click on 'Resources' then 'Onine Community.'
Verified: 2/10/2014

Little Hearts

National network. Founded 1998. Provides support, resources, networking, and hope to families affected by congenital heart defects. Provides discussion board, news email group, parent matching program, and annual picnic.
Write:
Little Hearts
P.O. Box 171
Cromwell, CT 06416
Voice: 1-866-435-4673
Website: littlehearts.org
Verified: 2/10/2014

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