External Long-QT Syndrome Links
American Heart Association - Long-QT Syndrome
A short Frequently Asked
Questions (FAQ) about the disease.
Assocation du Syndrome du QT Long
The first long-QT syndrome
information site in French. The author, a french woman, suffers herself from
the syndrome and describes her struggle with the disease.
With english translations.
Cardiac Risk In The Young -
Long-QT Syndrome (UK)
The organization has been
established in 1995. Since then, Cardiac Risk In The Young (CRY) has been
involved in bringing cardiac screening to communities in the UK where there
has been a loss and made a contribution to medical research as well as how a
healthy athletic heart is understood.
CARE Foundation (USA)
The site of the Cardiac
Arrhythmias Research and Education (CARE) Foundation, Inc. is full of
stories of people confronted to long-QT syndrome.
Carissa's Homepage (USA)
A nicely done site by an
american woman suffering from two life-threatening health problems,
including long-QT syndrome.
Courtney's Crusade (USA)
This site is dedicated to
Courtney VanCronkhite who died after sudden cardiac arrest caused by long-QT
syndrome. The goal at Courtney's Crusade is to begin the process of
educating and empowering the Houston community at large in the crusade to
stop sudden cardiac death and to raise awareness of this critical
life-threatening condition as well as educating the community at large.
Drugs That Prolong The
A complete list of drugs
that prolong the QT-interval or/and induce Torsade de pointes (TdP). The
list is maintained by Raymond L. Woosley, MD, PhD, in the Department of
Pharmacology at Georgetown University.
Kara Mia (USA)
The book "Kara Mia" is the
first literary approach to long-QT syndrome. The site provides an exerpt
from the book, information about the authors and a small link collection.
Lange QT-tijd syndroom (Netherlands)
A brief summary of long-QT
syndrome in Dutch.
Langes QT-Syndrom Deutschland (Germany)
This German language site
was started by a German long-QT syndrome sufferer. It contains small
collections of links and articles regarding the disease.
Long-QT Syndrome Support Center (USA)
The site was
founded in the fall of 2002 by Mark, an individual with Long-QT syndrome, to
help educate patients and professionals within the medical community about
Long-QT Syndrome Family
Support Group United Kingdom (UK)
The group exists to support
sufferers and their parents through a variety of means.The aim through the
site is to bring information to everyone who may need to understand long-QT
- the symptoms, the treatments, how to live as normal a life as possible.
Long-QT Syndrome - Suite101.com
A nice site from the USA
with links and interesting articles. The author's daughter suffers from
PACE (South Africa)
Cardiac Events or PACE is the first African website about rare heart
diseases such as long-QT syndrome.
Russian website run by Dr.
Dmytro Sydorovych with Frequently Asked Questions (FAQ) about long-QT
SADS United Kingdom
The Sudden Arryhthmia Death
Syndromes Foundation (SADS) in Salt Lake City (Utah) and its international
affiliates focus on long-QT syndrome and provides a large amount of
Sindrome QT Largo - Centro
Virtual De Information (Spain)
This Spanish site and
patient email group was created to provide support and increase awareness
of the syndrome in Spanish-speaking countries. The site is dedicated to the
memory of young woman who died of Long-QT syndrome.
See the frequently asked questions (FAQ)
section in Spanish.
The Heart Of Discovery - Long-QT Syndrome
Information about the
disease provided by the Texas Heart Institute.
Una Famiglia Per Il Cuore (Italy)
A patients' association
created by the Maugeri foundation in Italy that helps Italian speaking
patients to get information on Long-QT syndrome and other arrhythogenic
Wikipedia - Long-QT syndrome
A detailed description of
the disease provided by the free encyclopaedia.
With references, related topics and external
Yahoo! Long-QT Syndrome
Support Group (USA)
This support group is for
people who are suffering from long-QT syndrome 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.
Subscription is required.
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