Nonprofit Spotlight

C.A.R.E. FOUNDATION
(800) 404-9500

Mission:

Since 1995, the Cardiac Arrhythmias Research and Education (CARE) Foundation, Inc. has actively raised money to support research and education programs in inherited electrical and structural heart conditions. Electrical heart conditions include Long QT Syndrome (LQTS) and Brugada’s Syndrome. Structural heart conditions include hypertrophic cardiomyopathy (HCM) and arrhythmogenic right ventricular cardiomyopathy (ARVD/C).

Advocacy

CARE lobbied U.S. airlines to carry automatic external defibrillators (AEDs). Today, all domestic air carriers have trained crews and are equipped with these lifesaving devices.

CARE worked for passage of the Genetic Information Nondiscrimination Act (GINA), which makes it illegal to deny employment or insurance to a person based on their genetic risk or inherited disorder.

Research

CARE has granted nearly $500,000 to young investigators to study cardiac arrhythmias and sudden death.

As a member of the Sudden Cardiac Arrest Coalition, CARE works with 25 leading advocacy and professional organizations. This group introduced the Public Health Services Act to the US Congress, a bill that would increase research and promote awareness for the prevention of sudden cardiac arrest.

Education

Each year, CARE’s Heart to Heart educational programs bring together patients and affected families to network, ask questions, and learn about the latest clinical breakthroughs from physician experts.

Education programs are available on the topic of Long QT Syndrome. These presentations allow health care providers to increase awareness and understanding of arrhythmia disorders affecting children and young adults.

Patient and Family Support

When a patient or affected family member contacts CARE, they find compassion, empathy and support from people have walked in their shoes. That can mean the world to someone facing what may be the most difficult and frightening time in their life.

Each year, CARE responds to requests for support from over 3,000 patients and families and more than 1,000 health care professionals.

CARE’s website is rich with information and the latest news regarding arrhythmia science, clinical research, genetics healthcare policy, medical resources and links to other organizations.

For more information, go to www.longQT.org | 427 Fulton Street | Seymour, WI, 54165 | 800.404.9500