Resources- Specific Diagnosis Card Catalog- Long QT Syndrome

Who to Contact

Cardiac Arrhythmia Research and Education (CARE) Foundation
2082 Michelson Drive, #301
Irvine, CA 92612
949-752-2273 (phone)
800-404-9500 (toll-free)
E-mail: care@longqt.org
Web: www.longqt.org

CARE was formed in 1995 by a group of eletrophysiologists and individuals who have been touched by the trauma of sudden cardiac death. The foundation's two primary goals are to raise funds for clinical research of cardiac arrhythmias and to educate the public and the medical community about sudden death. The director of CARE, Doris Toran Goldman, is the mother of two children who suffered sudden cardiac death. Medical support for CARE is provided by the Coalition for the Prevention of Sudden Cardiac Death.

The Sudden Arrhythmia Death Syndromes Foundation
508 E South Temple, Suite #20
Salt Lake City, UT 84102
800-786-7723 (toll-free)
801-531-0937 (phone)
801-531-0945 (fax)
E-mail: sads@sads.org
Web: www.sads.org

SADS has a missiong to identify those who are genetically predisposed to sudden death due to cardiac arrhythmias, and thereby save the lives of children and young adults.

Its goals are:

To educate health care providers and the lay public in order to promote early diagnosis and treatment.

To serve as a physician referral resource and to provide information to physicians who care for patients with cardiac arrhythmias.

To assist all those affected by the sudden death of a young loved one, or who have been diagnosed with a cardiac arrhythmia, by providing informational materials, facilitating support groups, and maintaining an active networking program.

To inform families, physicians, and communities about genetic cardiac arrhythmias in the young, and thereby prevent sudden cardiac death in young people.

To encourage research on genetic cardiovascular diseases predisposing the young to sudden death.

The SADS Foundation is committed to supporting families and individuals with genetically mediated cardiac arrhythmias through education, research, and advocacy.

Where to Go to Chat with Others

Sudden Arrhythmia Death Syndromes
A place for those people affected by Long QT Syndrome and other cardiac arrhythmia disorders, to share information, stories, and to provide comfort and support, to better help them deal with these disorders and to help them know they are not alone.

Long QT
This support group is for people who are suffering from long QT or know of someone who is. Topics include, but are not limited to, genetic testing, testing for long QT, symptoms, treatment, or other long QT interests.

Long QT Family Support Group Message Board
This facility has been set up to allow the users of the site to communicate with each other.

Learn More About It

The Inherited Long QT Syndrome: Frequently Asked Questions

Long QT Syndrome
From the American Heart Association

About Long QT Syndrome

Frequently Asked Questions about Long QT

Links

Cardiac Arrhythmias Research and Education Foundation, Inc.

The Sudden Arrhythmia Death Syndromes Foundation

Long QT Family Support Group - UK

Long QT - Help Spread the Word