Links

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.
  • 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 by Sandra Ramsey following the birth of her daughter - Charlie Grace Ramsey. Charlie was born with Complex Congenital Heart Defects. 
  • Children's Heart Federation - a UK charity providing information 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 
  • www.counselling-directory.org.uk - The purpose of the site is ultimately to provide the UK with a huge counselling support network, enabling those in distress to find a counsellor close to them and appropriate for their needs. This is a free, confidential service that will hopefully encourage those in distress to seek help. The website also contains a number of sections on emotional disorders (types of distress section) and provides some useful statistics. Every counsellor on the site who has submitted their profile has either sent a copy of their qualifications and insurance cover to us, or is registered with a professional body online with recognised codes of ethics and practice, this way we can be assured of their professionalism.
  • 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)
  • The Somerville Foundation - 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.
  • Pulse Oximetry Screening Information - Pulse oximetry as a screening test for congenital heart disease in newborn babies.


 National Contacts


  • British Cardiac Patients Association,  15 Abbey Road, Bingham, Nottingham. NG13 8EE
  • British Heart Foundation Tel:020 7554 0000
  • Carers Direct - a national information, advice and support service for carers in England.
  • Contact a family,   Helpline: 0808 808 3555 - free for parents and carers (10am - 4pm Mon-Fri) Email: info@cafamily.org.uk Supporting families caring for disabled children and children with specific health conditions, including rare disorders. Produce a range of factsheets on issues including benefits, special educational needs and social services assessments. 
  • Ellis van Creveld - a website written by a parent for other parents. Ellis van Creveld Foundation, Farthingale Farm, Hackmans Lane, Purleigh, Essex CM3 6RW
  • Newlife Charity
  • Action to help disabled and terminally ill children in the UK - See more at: http://www.newlifecharity.co.uk/#sthash.Fofjed3x.dpuf
  •  Action to help disabled and terminally ill children in the UK - See more at: http://www.newlifecharity.co.uk/#sthash.Fofjed3x.dpuf
  • Foundation for disabled children. Hemlock Way, Cannock, Staffs WS11 7GF
  • Pyjama Fairies | Bringing a little magic to children in hospital Pyjama Fairies is the only UK charity to make pyjamas and surgical gowns specially designed for babies and children up to age 16 having surgery or any other associated medical test. Each garment is made in colourful, age-appropriate fabric and is designed to minimise discomfort when medical intervention is necessary