Sudden Cardiac Arrest Organizations Other Organizations Interested in Sudden Cardiac Arrest and Cardiovascular Health Resources Provided by Medical Device Companies Government Websites

This list of Sudden Cardiac Arrest (SCA)-related websites, listed in alphabetical order by category, is intended to provide a broad range of useful information. An asterisk * next to the name designates a founding member of the Sudden Cardiac Arrest Coalition, a group of organizations passionate about preventing SCA deaths through legislative initiatives that lead to greater public awareness, research, and access to life-saving therapies.

SCA Organizations

• Cardiac Arrhythmias Research and Education (CARE) Foundation *
  The C.A.R.E. Mission is to formulate, promote and lead initiatives to prevent sudden cardiac death due to acquired and heritable heart rhythm disorders by advocating increased support for comprehensive scientific research and clinical trials; educating patients, the public and healthcare professionals to increase awareness; and advancing strategies to identify, protect and support at-risk individuals and their families.
• Hypertropic Cardiomyopathy Association *
  The objectives of the Hypertrophic Cardiomyopathy Association, a leading cause of sudden cardiac arrest in the young and the number one cause of cardiac death among athletes, are to develop and maintain a network of support for individuals with HCM and their families; promote education about the symptoms and treatment options for patients, their families, and their medical providers; heighten awareness and protect against sudden cardiac arrest and life threatening arrhythmias and their prevalence within the HCM community and more.
• Parent Heart Watch *
  Parent Heart Watch is a national network of families who have lost a child to sudden cardiac arrest (SCA). The families of Parent Heart Watch are moving from their tragic loss to take action that can protect other children. Individually they have changed laws, placed thousands of defibrillators in local communities, and conducted screening events for thousands of kids. Together, the energy and focus of these passionate families is to become one strong voice that will protect even more young lives from sudden cardiac arrest.
• Sudden Arrhythmia Death Syndromes (SADS) Foundation *
  The mission of the Sudden Arrhythmia Death Syndromes (SADS) Foundation is to save the lives and support the families of children and young adults who are genetically predisposed to sudden death due to heart rhythm abnormalities.The SADS Foundation is dedicated to informing the general public (and families, medical professionals), about the effects of untreated/undiagnosed cardiac arrhythmias and the methods by which death can be prevented and encourages genetic research in conditions that may lead to sudden cardiac death in the young and acting as a link between researchers and families.
• Sudden Cardiac Arrest Association *
  The Sudden Cardiac Arrest Association (SCAA) is a nonprofit organization singularly focused on sudden cardiac arrest. SCAA identifies and unites survivors, those at risk of sudden cardiac arrest, as well as others who are interested in being advocates on SCAA issues in their communities and beyond. Its membership is dedicated to promoting solutions to prevent sudden cardiac death, including increased awareness, immediate bystander action, public access to defibrillation (PAD), cardiovascular disease prevention, and access to preventative therapies.
• Sudden Cardiac Arrest Coalition
  The Sudden Cardiac Arrest Coalition is comprised of more than 30 organizations passionate about preventing Sudden Cardiac Arrest (SCA) deaths through legislative initiatives that lead to greater public awareness, research, and access to life-saving therapies. The Heart Rhythm Society was Co-Chair of the Coalition at its founding. The Coalition created the www.stopcardiacarrest.org website.
• Sudden Cardiac Arrest Foundation *
  The Sudden Cardiac Arrest (SCA) Foundation was established to meet the need for an easily accessible, objective, comprehensive information clearinghouse on the prevention of death and disability due to SCA and serves as a central virtual meeting place for "any time, any place" exchange of information, ideas, experiences and guidance related to SCA.

Other Organizations Interested in Sudden Cardiac Arrest and Cardiovascular Health

• Alliance for Aging Research *
  The private, not-for-profit Alliance for Aging Research is the nation's leading citizen advocacy organization for improving the health and independence of Americans as they age. The Alliance was founded in 1986 to promote medical and behavioral research into the aging process.
• The American Heart Association
  The American Heart Association (AHA) is a national voluntary health agency to help reduce disability and death from cardiovascular diseases and stroke. HeartHub™ is the AHA's patient portal with information, tools and resources visit the Arrhythmia portal at http://www.hearthub.org/hc-arrhythmia.htm
• American College of Preventive Medicine *
  The American College of Preventive Medicine (ACPM) is the national professional society for physicians committed to disease prevention and health promotion.
• American Safety and Health Institute *
  The mission of the American Safety & Health Institute (ASHI) is to continually improve safety and health education by promoting high standards for members, principles of sound research for curriculum development and the professional development of safety and health Instructors worldwide.
• American Society of Echocardiography *
  The American Society of Echocardiography (ASE) is a professional organization of physicians, cardiac sonographers, nurses and scientists involved in echocardiography, the use of ultrasound to image the heart and cardiovascular system. ASE is committed to excellence in cardiovascular ultrasound and its application to patient care through education, advocacy, research, innovation and service to our members and the public.
• Black Women's Health Imperative *
  The Black Women's Health Imperative (Imperative) seeks to improve the health and wellness of Black women by providing health resources and information, community health and wellness education, promoting advocacy and health policies, and interpreting and issuing reports on relevant research about the health status of America's Black women.
• Cardiac Electrophysiology Society *
  The Cardiac Electrophysiology Society (CES) is an international society of basic and clinical scientists and physicians interested in cardiac electrophysiology and arrhythmias.
• Cheney Cardiovascular Institute at the George Washington University *
  The Richard B. and Lynne V. Cheney Cardiovascular Institute's mission is to promote clinical research, education, patient care and community service with the goal of accelerating the pace of scientific discovery, reducing mortality and improving the quality of life of Americans with cardiovascular disease.
• Children's Cardiomyopathy Foundation *
  The Children's Cardiomyopathy Foundation (CCF) is a national, non-profit organization focused on pediatric cardiomyopathy, a chronic disease of the heart muscle. CCF is dedicated to accelerating the search for cures while improving diagnosis, treatment, and quality of life for children affected by cardiomyopathy.
• Initial Life Support Foundation *
  The Initial Life Support Foundation, Inc. (ILSF) provides services and resources to individual CPR/AED instructors, Parish Nurses, local EMS agencies and/or public or private emergency care training & consulting entities that help establish and manage onsite emergency response programs — including the availability and use of automated external defibrillators (AEDs).
• International Association of Fire Fighters *
  The International Association of Fire Fighters, represents more than 295,000 full-time professional fire fighters and paramedics who protect 85 percent of the nation's population. More than 3,100 affiliates and their members protect communities in every state in the United States and in Canada. In addition to city and county fire fighters and emergency medical personnel, the IAFF represents state employees, federal workers and fire and emergency medical workers employed at certain industrial facilities.
• The KEN Heart Association
  The KEN Heart Association is a non-profit organization aiming to educate parents, student athletes, schools and athletic programs on the warning signs of a possible cardiac defect, to promote the placement of Automated External Defibrillators (AEDs) in athletic arenas and more.
• Louis J. Acampora Foundation *
  In his first high school lacrosse game, 14-year-old Louis Acompora blocked what appeared to be a routine shot with his chest, collapsed on the field, and died of Commotio Cordis, a syndrome that results from a blunt impact to the chest which leads to cardiac arrest. His parents founded the Foundation, which is committed to seeing an improvement in sports safety with a special focus on the placement of AEDs in all schools.
• Medic First Aid International *
  MEDIC FIRST AID International is a worldwide innovator and leader in CPR/first aid emergency care training programs for business, industry, and the public. The company has certified an international network of more than85,000 instructors who have trained more than ten million first aid providers over the past 30 years.
• Mended Hearts *
  Mended Hearts, a national nonprofit organization affiliated with the American Heart Association, has been offering the gift of hope to heart disease patients, their families and caregivers for more than 50 years. Mended Hearts partners with 460 hospitals and rehabilitation clinics and offers services to heart patients through visiting programs, support group meetings and educational forums. Its mission is to "inspire hope in heart disease patients and their families."
• National Association of EMS Physicians *
  The National Association of EMS Physicians® is an organization of physicians and other professionals partnering to provide leadership and foster excellence in out of hospital emergency medical services. Since EMS physicians emanate from various disciplines (such as emergency medicine, family practice, pediatrics, surgery and cardiology) and non-physicians encompass an unlimited range of professions, it is the continuing role of the NAEMSP to coordinate and focus advances in medical care, research and training in each of these fields as they relate to EMS.
• National Athletic Trainers' Association *
  The National Athletic Trainers' Association (NATA) Research and Education Foundation is the largest national funding source for research and education for the athletic training profession. Since its founding, the Foundation has distributed over $2 million in scholarships and $3 million in research grants. The Foundation's revenues are provided through contributions from individuals, sponsors, corporations and NATA regional and local organizations, as well as special events.
• The National Registry of Sudden Death in Young Athletes
  The Minneapolis Heart Institute Foundation has generated and maintained a unique registry of cases comprised of young trained athletes who have died suddenly, gathering age of an athlete, race, circumstances of sudden death, possible prior symptoms, relevant clinical information and the type of sport the athlete participated in. Dr. Barry J. Maron, MD, Director of the Hypertrophic Cardiomypathy Center at the Minneapolis Heart Institute Foundation and a senior investigator at MHIF, is the Director of the Registry.
• Pediatric and Congenital Electrophysiology Society *
  The Pediatric & Congenital Electrophysiology Society (PACES), is an international nonprofit of physicians and allied professionals dedicated to improving the care of children and young adults with cardiac rhythm disturbances. The group's primary mission is to foster high-quality collaborative research and exchange of ideas on arrhythmia topics that are particularly relevant to infants and children, or patients of any age with congenital heart disease.
• Project A.D.A.M. *
  Project ADAM (Automated Defibrillators in Adam's Memory) helps schools across the nation implement public access defibrillation (PAD) programs through support and education and by helping schools determine the need for automated external defibrillators (AEDs), secure funding, provide program implementation templates and assist with effective marketing of the program. Project ADAM is working to establish affiliate sites across the country in order to help all schools become equipped to handle a sudden cardiac incident.
• Ramon Brugada, Sr. Foundation
  The mission of the Foundation is to "promote research and teaching and provide compassionate care in the area of heart disease, particularly for those diseases that may cause arrhythmias and sudden cardiac death." The website describes the hereditary Brugada syndrome, which causes sudden unexpected cardiac death in apparently healthy individuals due to severe disturbances of the rhythm of the heart.
• Research Center for Stroke & Heart Disease
  The Research Center for Stroke & Heart Disease is a non-profit organization established to raise awareness of and prevent stroke and heart disease in communities. The Research Center designs, implements, and evaluates projects to educate individuals and motivate them to adopt practices which have been shown to reduce risk factors.
• Society for Women's Health Research *
  The Society for Women's Health Research is the nation's only non-profit organization whose mission is to improve the health of all women through research, education and advocacy. The Society encourages the study of sex differences between women and men that affect the prevention, diagnosis and treatment of disease.
• WomenHeart (National Coalition for Women with Heart Disease) *
  WomenHeart's mission is to improve the health and quality of life of women living with or at risk of heart disease, and to advocate for their benefit. WomenHeart is committed to serving the needs of women with diagnosed heart disease; believes that education and training enables women to take charge of their heart health and advocate for other women; is dedicated to ensuring that women h ave equal access as men to quality healthcare and servicesand actively seeks meaningful and productive partnerships with other organizations to educate and encourage women to take charge of their heart health.

Resources Provided by Medical Device Companies

• LifeBeat Online is an e-newsletter created by Boston Scientific to help people with cardiac devices live full, active lives, providing cardiac news, health tips, and more.
• Close the Gap, an education initiative sponsored by Boston Scientific, looks at ways to address disparities in cardiovascular care for the underserved patient populations of women, black Americans, and Hispanic/Latino Americans, focusing on three areas: community education, patient values and quality measures.
• Medtronic offers many resources on SCA and treatments, including personal stories of individuals with implanted pacemakers, defibrillators and cardiac monitoring devices.
• Inside Cardiac Arrest by St. Jude Medical's provides information on Sudden Cardiac Arrest so that individuals can better understand its potential dangers to themselves, their family and their friends. This site includes information on the risk factors for SCA and gives insight into questions to ask a physician upon seeking professional care.
• US AGAINST ATHERO is a campaign sponsored by AstraZeneca to increase U.S. awareness of atherosclerosis (athero), with hopes that all Americans will take steps to take care of their arteries. It offers education and valuable information about atherosclerosis tosupport people in becoming advocates for their own health and for the health of others.
• Owned and operated by current EMS professionals, the AED Superstore® supplies Automated External Defibrillators (AEDs), accessories, and program implementation services. Its AEDtalk.com blog is "dedicated to saving lives with Automated External Defibrillators and CPR."

Government

• National Instititutes of Health (NIH) Heart and Circulation information: http://health.nih.gov/category/HeartandCirculation
• National Heart, Lung, and Blood Institute (NHLBI) Heart and Blood Vessel Diseases information: www.nhlbi.nih.gov/health/dci/Browse/Heart.html
• The goal of the National Library of Medicine's MEDLINEplus is to provide accurate, current, medical information about specific diseases and conditions. It links to consumer health information from the NIH in English, Spanish, and other languages. Through the site, you also can view medical dictionaries and encyclopedias, lists of hospitals and physicians, and Web sites for other health organizations. MEDLINEplus Blood, Heart and Circulation information:
  www.nlm.nih.gov/medlineplus/bloodheartandcirculation.html
• Healthfinder is the U.S. Department of Health and Human Services' health information site. Through Healthfinder, you can link to online publications, databases, Web sites, and support and self-help groups, as well as government agencies and other organizations serving the public interest. Browse to find hand-picked resources from government agencies, nonprofit organizations, and universities at www.healthfinder.gov/HealthAtoZ/
• MedWatch: The FDA Safety Information and Adverse Event Reporting Program is the U.S. Food and Drug Administration gateway for finding clinically important safety information and reporting serious problems with human medical products: www.fda.gov/Safety/MedWatch/default.htm
• Federal Occupational Health (FOH) is a non-appropriated agency and a service unit within the Department of Health and Human Services (HHS) that provides occupational health and wellness services exclusively to federal employees. Its Automated External Defibrillator Program at www.foh.dhhs.gov/services/AED/AED.asp includes useful links and guidelines.