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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: 1/15/2013

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 for 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: 2/12/2013

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:

Society for Mitral Valve Prolapse 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: 1/9/2013

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: 1/15/2013

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: 2/12/2013

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: 2/14/2013

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: 1/9/2013

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: 2/12/2013

The Hypertropic CardioMyopathy Association

Online. Offers support for those with hypertropic cardio-mypathy (a genetic 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

Website: http://www4hcm.org or online support forum http://www.4hcm.org/forums/forum.php

Verified: 1/30/2013

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