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JEMAH e.V.
JEMAH e.V. ist eine
Selbsthilfegruppe, die sich für die Belange von Jugendlichen
und Erwachsenen mit angeborenem Herzfehler einsetzt.
Herzkind e.V.
Der Verein als gemeinnützige
Selbsthilfeorganisation widmet sich der Verbesserung von Betreuung
und Beratung herzkranker Kinder, Jugendlicher und Erwachsener
sowie Ihrer Familien.
IDHK
Interessengemeinschaft Das
herzkranke Kind e. V. (IDHK)
Katharinenhospital Stuttgart
Krankenhaus ... genug
gesagt.
Defi-Liga
Selbsthilfegruppe von Menschen mit einem
implantierbaren Cardioverter-Defibrillator-System
Defibrillator-Forum
Beiträge mit Erfahrungen und Hilfen für Betroffene einer Defibrillator-Implantation und/oder deren Angehörigen
Sudden Arrhythmia Death Syndromes (SADS) Foundation
MISSION: To identify those who
are genetically predisposed to sudden death due to cardiac
arrhythmias, and thereby save the lives of children and young
adults.
European Long QT Syndrome Information Center
QTsyndrome.ch is a medical
information site maintained by non-medical trained people.
SADS UK
The Ashley Jolly Sad Trust (SADS
UK) is a voluntary organisation that exists to raise awareness
about little known heart conditions in young people and provides
information and support to families who have experienced the
sudden unexpected death of a loved one due to such a condition.
Long QT Syndrome Support Group: Irish Heart Foundation
This Support Group was started in 2006 by Lucinda McNerney in association with the Irish Heart Foundation.
CRY Cardiac Risk in the Young (UK)
CRY - was founded in May 1995 by Alison Cox.
Aims and achievements: Raise awareness of Cardiac Risk in the Young and Sudden Death Syndrome
The Canadian SADS Foundation
A registered charitable
organization established in 1995 by a group of parents and health
care professionals who recognized the need to identify those at
risk for a preventable sudden death due to treatable arrhythmia
disorders.
SADS Australia
This condition is not well
known. We hope to change that, and make the doctors and general
public aware of what exactly Long QT syndrome is. We had never
heard of it and so had no idea just how serious this condition is.
Drugs That Prolong the Q-T Interval and/or Induce Torsades de
Pointes
Information from the
FDA-approved drug labeling and the medical literature.
Education and Research on drug-induced arrhythmias
QTdrugs.org is devoted to
Education and Research on drug-induced arrhythmias, especially
those due to prolongation of the QT interval on the
electrocardiogram (ECG). Prolongation of the QT interval can
result in the potentially lethal arrhythmia, torsades de pointes.
Cardiac Arrhythmias Research and Education Foundation, Inc
This website is dedicated to the
loving memory of those children and young adults whose lives were
lost to sudden cardiac death - and to their families and friends
who have devoted tireless energy creating and supporting the
Cardiac Arrhythmias Research and Education Foundation, Inc.
The CaF Directory - LONG QT SYNDROME
Contact a Family is a UK charity
which helps families who care for children with any disability or
special need. We are a main source of information about rare
disorders and are able to assist affected adults as well as
children. The CaF Directory Online contains details of many
medical conditions and also patient support groups. The
information in it is also provided as part of the NHS Direct
Online service.
Long QT Syndrome Support Center
Long-QT-Syndrome.com was started in the fall of 2002 by Mark, a long QT syndrome patient, in hopes of supporting families and educating professionals within the medical community about long QT syndrome.
YAHOOgroups - longqt
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.
The Zapper
For Cardioverter-Defibrillator
Implant Recipients, Families, and Care Givers
ICD Support Group
We are a group of patients, friends, relatives and basically those concerned about, know someone with or have an an ICD.
The Heart of America Sudden Cardiac Survivors Network
The Heart of America Sudden Cardiac Survivors Network is a non-profit organization whose mission is to support survivors and their families, advocate community access to Automatic External Defibrillators (AED’s) and educate the public about SCA and early defibrillation.
Guidant
Guidant Corporation - Leader in
Medical Device and Heart Disease Therapies: Pacemakers,
Implantable Defibrillators, Stents
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