Heart Disease
Self Help Clearinghouse
SVT (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.
Write:
845-567-0347 (updates only)
Website: http://groups.yahoo.com/groups/SVTSupport/
Verified: 04/27/2007
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
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: 05/02/2007
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: 10/26/2007
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. 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: 11/12/2007
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 persons
together for support, referrals to local support groups nationwide.
Books 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)
Website: http://www.kidswithheart.org
E-mail: michelle@kidswithheart.org
Verified: 04/29/2007
Adult 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.
Philadelphia, PA 19119
Voice: 1-800-921-2242 or 215-849-7260
Fax: 245-849-1261
Website: http://www.achaheart.org
E-mail: info@achaheart.org
Verified: 10/10/2007
Congenital Heart Anomalies-Support, Educ.,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: Jim and Anita Myers 419-825-5575 (day)
Verified: 11/13/2007
SADS 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: 10/26/2007
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, encouragement in a fun and
interactive environment. Also information on local groups.
Website: http://www.pacemakerclub.com
E-mail: info@pacemakerclub.com
Verified: 04/27/2007
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.
Write:
Children's Cardiomyopathy Fdn.
P.O. Box 547
Tenafly, NJ 07670
Voice: 1-866-808-2873
Website: http://www.childrenscardiomyopathy.org
E-mail: info@childrenscardiomyopathy.org
Verified: 10/27/2007
Congenital Heart Information Network
Online. Offers information, support 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: 04/27/2007
Arrhythmia 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: 440178904
Fax: 440178904
Website: http://www.heartrhythmcharity.org
E-mail: info@arrhythmiaalliance.org
Verified: 11/12/2007
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
Cromwell, CT 06416
Voice: 1-866-435-4673
Fax: 860-635-0006
Website: http://www.littlehearts.org
E-mail: info@littlehearts.org
Verified: 04/30/2007
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