Medical contact for physicians, or families with any LQT questions.
I am available to discuss clinical cases with cardiologists and clinicians interested in the subject.
Silvia G Priori, MD,PhD Clinic of “Inherited Arrhythmogenic Disorders”
Director of Molecular Cardiology and Electrophysiology
Fondazione.
S. Maugeri
Via Ferrata 8
27100 Pavia- Italy.
Fax: +39 0382 592094
Email: spriori@fsm.it
The Cardiac Inherited Diseases Group (NEW)
This site aims to reduce sudden death through recognition, education and research into inherited cardiac diseases.
QT Kanga & CRY Teddy Campaign in UK
Follow the campaign launched by our very own QT (Cutie) Kanga and CRY Tedddy, at the European Parlaiment calling on the World health Organisation to recognise Sudden Death Syndrome.
Online Long QT Syndrome Support Group
Bringing families together, sharing information and support, weekly chat on Sunday Evenings (Monday Lunch time in Australia)
Kara Mia
Kara Mia is the first book to tell the dramatic tale of Long QT Syndrome, an insidious cause of sudden death in seemingly healthy children and young adults. written by Kara’s mother an operating room nurse, and Kara’s physician a pediatric neurologist, the book covers Kara’s story from cardiac arrest on the high school track through her ongoing rehabilitation.
Brugada Syndrome
This site describes information about Brugada Syndrome, a syndrome that causes sudden unexpected cardiac death, due to severe disturbances of the heart rhythm in apparently healthy individuals.
CARE Foundation
The Cardiac Arrhythmias Research and Education (C.A.R.E.) Foundation, founded in 1995 by a group of Electrophysiologists and individuals touched by the trauma of sudden cardiac death.
European Information Site
To Provide comprehensive information about Long QT Syndrome for patients and their relatives and to be rudimentary guide for medical trained people.
Medtronic Rhythms of Life
Pacemaker and Defibrillator patient newsletter, you will be able to read about some of the people who have agreed to share their life stories.
The Pacemaker Club
This club is operated by cardiac pacemaker recipients for other recipients and their families & friends. Our mission is to provide moral support and information.
PD Heart Support Group
The congential Heart Defect Support Group mailing list (PD Heart) is a forum for families of children with Congential Heart Defects (CHD) to share information and experiences, and to provide support.
Congenital Heart Information Network (C.H.I.N)
Information.Resources.Support for families, adults & professionals.
Camp del Corazon
Providing a summer camp for children with heart disease for free. All proceeds are spent entirely on the camp, staffed entirely by volunteers.
Annals of Noninvasive Electrocardiology
Thanks to an unrestricted educational grant provided by Medtronic, Guidant and St Jude.Please, feel free to visit it and join us!!
Australian Sites:
Royal Children’s Hospital
Our goal is to ensure that all infants and children born with heart defects, or acquiring heart disease during childhood, have access to effective diagnostic and treatment facilities and are given the best possible chance of enjoying a full and healthy life.
Starlight Children’s Foundation
Brightening the lives of seriously ill children
Make a Wish Foundation
Bringing magic and joy to children and young people with a life threatening illness
Medic Alert
24 hour Personal Medical Emergency Information and Identification Services.
Offering peace of mind to members, friends and loved ones
Genetic Support Network Of Victoria (GSNV)
The Genetic Support Network Victoria is a vibrant and active organisation which aims to maintain a thriving network committed to promoting the interests and well-being of people affected by genetic conditions.
Our Community
Providing practical resources, support linkages between community networks and the general public, business and government, building capacity to strengthen the community in every Australian State and Territory.
Australian Association For Children with a Disability
Information, Support & Advocacy for Families of Children with a Disability.
Mydr. For a Healthy Australia
The comprehensive Australian site for all your health needs.
Heartkids
www.heartkids.org.au
Heartbeat Victoria
www.heartbeatvictoria.org
Heart Foundation
www.heartfoundation.com.au
Fremantle Heart Patients Support Group
www.fremantleheart.asn.au
Marfan Support and Information in NSW
www.marfan.net.au
James Crofts Hope Foundation
The Foundation is committed to providing assistance for families of patients with brain tumours, and also to the advancement of the treatment and research of these conditions
