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Links to Useful Sites

  • Children's Heart Association - a UK charity which provides support for families with child heart problems. The site provides a list of heart-related medical terms, what to expect in intensive care and a list of common heart drugs (see the Information menu)
     
  • Cardiac Risk in the Young - a UK charity providing information and support also have website on Sudden Arrhythmic Death Syndrome (SADS)
     
  • Cardiovascular Diseases Specialist Library – Part of the National Library for Health includes patient information relating to congenital heart disease.
     
  • The Charlie Ramsey Research Fund – The Charlie Ramsey Research Fund was set up following the birth of our daughter - Charlie Grace Ramsey. Charlie was born with Complex Congenital Heart Defects
     
  • Child Health Specialist Library - Part of the National Library for Health includes patient information relating to congenital heart disease.
     
  • Children's Heart Federation - a UK charity providing information sheets on coping with all aspects of life as a family affected by heart problems and a newsletter of current issues on the subject.
     
  • Children's Health Information Network - USA based site with International information provided on congenital heart disease and an extensive list of links to websites on specific heart defects
     
  • DIPEX congenital heart disease module - experiences of UK patients who have congenital heart disease in video, audio or text format
     
  • Down's Heart Group - a UK website which provides information on some common types of congenital heart defects (Atrial Septal Defect, Atrioventricular Septal Defect, Fallot's Tetralogy, Persistent Ductus, Ventricular Septal Defect)
     
  • Grown Up Congenital Heart (GUCH) Patients Association - a UK charity offering support for families of teenagers or adults with congenital heart defects and information sheets including explanations of heart surgery that patients might undergo and advice on living with the condition
     
  • Heart Children - a charity based in Ireland offering detailed information on the many types of congenital heart defect and support for families
     
  • Heart Line - A voluntary organisation set up to offer help and support to children with heart disorders and their families regardless of how slight or severe the condition may be.
     
  • Heart Link – a charity based at Glenfield Hospital, Groby Road, Leicester LE3 9QP which offers parental support to parents of children with congenital heart conditions.
     
  • Heart Point - American site providing information on some specific types of congenital heart defects and also health tips for living with heart disease.
     
  • Little Hearts Matter - a UK charity for families affected by Hypoplastic Left Heart Syndrome
     
  • Pediheart - a USA site with separate sections for children, parents and professionals and access to medical journals
     
  • Pulse Oximitary Study Information - Pulse oximetry as a screening test for congenital heart disease in newborn babies
     
  • Royal Children's Hospital - an Australian Cardiology unit with an A to Z of cardiology topics including many congenital heart

 

National Contacts